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Category: <span>Health</span>
Home Archive for category "Health" (Page 2)

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Category: Health

Abigail’s rare childhood disease that she won’t outgrow
Guest Posts, Rare Disease, special needs

Abigail’s rare childhood disease that she won’t outgrow

By Tania Tirraoro February 26, 2018 February 24, 2018

It’s Rare Disease Day this week and evey year we like to highlight the day, on 28th February, by telling you some stories of children and their families who are …

Read more"Abigail’s rare childhood disease that she won’t outgrow"
Top tips for working on your child’s speech and language targets
Columnists, special needs, speech & language, TopTips

Top tips for working on your child’s speech and language targets

By Helen Coleman SpeechBlogUK February 2, 2018 February 2, 2018

The speech therapy process is very much a collaborative one.  Even if your child is lucky enough to get regular speech therapy sessions, that’s still only half-an-hour or an hour …

Read more"Top tips for working on your child’s speech and language targets"
How I learned to take the best advice (and ignore the rest) when raising my ADHD son
ADD/ADHD, Columnists, special needs

How I learned to take the best advice (and ignore the rest) when raising my ADHD son

By Barbara Follows January 31, 2018 January 28, 2018

In my first post on top tips for parenting a child with challenging behaviours, I suggested that you: Seek support and be compassionate with yourself and that you work as …

Read more"How I learned to take the best advice (and ignore the rest) when raising my ADHD son"
Legal grey zone lets health body strip vital funding from disabled children
Disability, Disability Financial Help, Guest Posts, Health, short breaks

Legal grey zone lets health body strip vital funding from disabled children

By Renata Blower January 26, 2018 January 25, 2018

Dominic is 11 and now in his final year at a mainstream primary school. He is very happy there and despite very complex medical issues and relying on a powered …

Read more"Legal grey zone lets health body strip vital funding from disabled children"
NHS liaison: The Designated Clinical /Medical Officer for SEND
Education Health and Care Plan, Guest Posts, Health, special needs

NHS liaison: The Designated Clinical /Medical Officer for SEND

By Tania Tirraoro November 23, 2017 November 21, 2017

As some of you may know, I have been doing my bit to help improve local SEND where I live in Surrey – right now I’m running their new Local …

Read more"NHS liaison: The Designated Clinical /Medical Officer for SEND"
Schools breaking the law on helping children with medical conditions
Health, SEN Reforms, SENCo, special needs

Schools breaking the law on helping children with medical conditions

By Tania Tirraoro October 13, 2017 August 20, 2020

A report published by Young Epilepsy says one in three schools in England are effectively breaking the law by not having Individual Healthcare Plans (IHP) in place for children with the …

Read more"Schools breaking the law on helping children with medical conditions"
Steph’s chronicle of her family’s journey through SEND, cancer and loss
Rare Disease, Reviews

Steph’s chronicle of her family’s journey through SEND, cancer and loss

By Tania Tirraoro September 14, 2017 March 6, 2018

Renata and I first met Steph Nimmo back in 2013 at the Department for Education when a group of SEND bloggers were invited to speak to then SEND Minister, Ed Timpson. …

Read more"Steph’s chronicle of her family’s journey through SEND, cancer and loss"
How I became a better child physio after parenting my sick newborn
Guest Posts, Health, special needs

How I became a better child physio after parenting my sick newborn

By Tania Tirraoro July 3, 2017 June 30, 2017

We love sharing good practice with you that can help both parents and professionals offer improve the lives of children with disabilities. Andrea Selly, is the mum of twins and …

Read more"How I became a better child physio after parenting my sick newborn"
Irlen syndrome: a screener’s perspective
Guest Posts, special needs, Treatment & Therapy

Irlen syndrome: a screener’s perspective

By Marguerite Haye June 6, 2017 June 5, 2017

Back in 2012, we ran a parent story about her son’s difficulties, “When the words move by themselves – it could be Visual Stress.” It’s also known as Irlen syndrome and …

Read more"Irlen syndrome: a screener’s perspective"
Tilly’s “tried on” lots of diagnoses, but none fit her mystery ultra-rare condition
Columnists, Rare Disease, special needs, Undiagnosed

Tilly’s “tried on” lots of diagnoses, but none fit her mystery ultra-rare condition

By Miriam Ingram April 28, 2017 April 26, 2017

Happy Undiagnosed Children’s Day! Did you know that around 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare …

Read more"Tilly’s “tried on” lots of diagnoses, but none fit her mystery ultra-rare condition"
Speech, language and communication needs: have your say and help change the future
Guest Posts, special needs, speech & language

Speech, language and communication needs: have your say and help change the future

By Special Needs Jungle April 6, 2017 April 5, 2017

We’ve covered the Bercow: Ten Years On review last year, when Barney looked at its recommendations a decade ago and what became of them. Today, we are really pleased to have …

Read more"Speech, language and communication needs: have your say and help change the future"
Act now to protect the NHS funding of rare disease medicines like Ava’s
Columnists, Health, Rare Disease, special needs

Act now to protect the NHS funding of rare disease medicines like Ava’s

By Beth McCleverty, Genetic Alliance UK April 3, 2017 April 3, 2017

Having a child with rare disease can mean that you are given very little information about their condition. Parent carers find themselves becoming the expert, rather than the professionals who are …

Read more"Act now to protect the NHS funding of rare disease medicines like Ava’s"
What’s in a name: Ehlers-Danlos Syndrome gets an important makeover
Ehlers Danlos Syndrome, Rare Disease, special needs

What’s in a name: Ehlers-Danlos Syndrome gets an important makeover

By Tania Tirraoro March 16, 2017 March 18, 2017

It’s rare for a medical condition to have its sub-types reclassified. It happened to autism a couple of years ago and there was uproar as people were worried they would …

Read more"What’s in a name: Ehlers-Danlos Syndrome gets an important makeover"
Rare disease research is vital to patients. Now let’s use it to improve services.
Columnists, Rare Disease, SEND & Health Research, special needs

Rare disease research is vital to patients. Now let’s use it to improve services.

By Genetic Alliance UK February 28, 2017 February 27, 2017

Rosie Collington of Rare Disease UK writes… The UK has a reputation internationally as a leader in rare disease research. Over the past few months at Rare Disease UK, we’ve …

Read more"Rare disease research is vital to patients. Now let’s use it to improve services."
The heartache that lives alongside our son’s very rare disease
Guest Posts, Rare Disease, special needs

The heartache that lives alongside our son’s very rare disease

By Tania Tirraoro February 27, 2017 February 26, 2017

Rare Disease Day is almost upon us and we have the third of our parent posts today about their lives with their child who has a very rare condition. We …

Read more"The heartache that lives alongside our son’s very rare disease"
Finding my son near death started our rare journey to his genetic diagnosis
Guest Posts, Rare Disease, special needs

Finding my son near death started our rare journey to his genetic diagnosis

By Tania Tirraoro February 26, 2017 February 26, 2017

It’s bad enough when your child has a severe illness, but when you discover it’s a condition few have heard of, the journey to getting them the right treatment gets …

Read more"Finding my son near death started our rare journey to his genetic diagnosis"
A 16 year quest to diagnose our rare bendy daughter
Ehlers Danlos Syndrome, Guest Posts, Rare Disease

A 16 year quest to diagnose our rare bendy daughter

By Tania Tirraoro February 17, 2017 October 18, 2018

It’s often difficult to cope and find support when your child has an uncommon or rare condition. Often, there is little understanding by the GP and no more than that …

Read more"A 16 year quest to diagnose our rare bendy daughter"
Tips for talking to children with language difficulties about their school day
Columnists, special needs, speech & language

Tips for talking to children with language difficulties about their school day

By Elizabeth Gunner SpeechBlogUK December 16, 2016 December 15, 2016

I always like to try and talk to my son about what he has done at school that day. His normal response is “things and stuff”, unless something very specific …

Read more"Tips for talking to children with language difficulties about their school day"
Supporting a child with Addison’s Disease at school
Columnists, Rare Disease, SENCo, special needs

Supporting a child with Addison’s Disease at school

By Marguerite Haye December 2, 2016 August 20, 2020

In October 2016, I attended the Cambridge Rare Disease Network Summit 2016 with Tania. It was very thought-provoking and listening to families’ stories, about gaining a diagnosis for their child …

Read more"Supporting a child with Addison’s Disease at school"
Can you help harness parental knowledge about genetic intellectual disability?
ADD/ADHD, Autism, learning disability, special needs

Can you help harness parental knowledge about genetic intellectual disability?

By Tania Tirraoro November 8, 2016 November 8, 2016

When I was at the Cambridge Rare Disease Network Summit the other week, I saw a very interesting presentation that has something of interest for every family of a child …

Read more"Can you help harness parental knowledge about genetic intellectual disability?"

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