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News, info, resources & informed opinion about Special Educational Needs, disability, children’s physical and mental health, rare disease. Campaigning to #FixSEND
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Category: <span>patient advocacy</span>
Home Health Archive for category "patient advocacy"

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Category: patient advocacy

My “control freak’s guide” for my disabled daughter’s dignity and care in hospital
Columnists, patient advocacy, Rare Disease, special needs

My “control freak’s guide” for my disabled daughter’s dignity and care in hospital

By Catriona Moore December 3, 2018 December 3, 2018

The thing that worries me most about my disabled daughter as she gets older is who will understand her. Who will really get to know who she is, and what …

Read more"My “control freak’s guide” for my disabled daughter’s dignity and care in hospital"
The rare disease game-changers showing how SEND co-production can work
patient advocacy, Rare Disease, special needs

The rare disease game-changers showing how SEND co-production can work

By Tania Tirraoro June 1, 2016 June 1, 2016

Last week I attended the European Conference on Rare Disease being held in Edinburgh*. It was three days of listening to presentations about developments in rare disease research and medicines and …

Read more"The rare disease game-changers showing how SEND co-production can work"
How a grandma got a clothing giant to “adapt” and help families with disabled children
Columnists, patient advocacy, special needs

How a grandma got a clothing giant to “adapt” and help families with disabled children

By Mrboosmum Premeditations Blog February 12, 2016 February 10, 2016

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 …

Read more"How a grandma got a clothing giant to “adapt” and help families with disabled children"
Patient Solidarity Day 2015
Health, patient advocacy, special needs

Patient Solidarity Day 2015

By Tania Tirraoro December 5, 2015 April 25, 2016

   We should all have access to the healthcare we need:  good quality, affordable care without fear of discrimination.  This is our human right.  ~ Patient Solidarity Day 2015 ~ …

Read more"Patient Solidarity Day 2015"
Mental Capacity and young people with SEND: A quick primer
Disability, Health, Mental Health, patient advocacy, special needs

Mental Capacity and young people with SEND: A quick primer

By Tania Tirraoro October 22, 2015 June 9, 2016

Earlier this week I attended the SEND seminar of the law firm, Boyes Turner who represent families having difficulties getting the SEN or disability support they need. The firm is …

Read more"Mental Capacity and young people with SEND: A quick primer"
SEN Assessments and Outcomes: What and when
Education Health and Care Plan, Health, Medical News, patient advocacy, special needs

SEN Assessments and Outcomes: What and when

By Tania Tirraoro July 16, 2015 May 15, 2020

I had a very busy day on Tuesday at the 25th Anniversary conference of national and international charity, Genetic Alliance UK. There is some really exciting work being done in genetic …

Read more"SEN Assessments and Outcomes: What and when"
Parents must advocate for each other to make the new SEND system work
patient advocacy, SEN Reforms, special needs

Parents must advocate for each other to make the new SEND system work

By Tania Tirraoro May 21, 2015 May 15, 2020

I was invited to speak at a conference last weekend called #RoadMapforLife at Swiss Cottage school, a special school in north London. Writing the presentation, I was reminded that even …

Read more"Parents must advocate for each other to make the new SEND system work"
#RareDisease Day: Impossible situations create remarkable people
Health, patient advocacy, Rare Disease, special needs

#RareDisease Day: Impossible situations create remarkable people

By Tania Tirraoro February 28, 2015 June 29, 2015

Today is Rare Disease Day and during the past week we have been featuring a number of families who have been affected by rare conditions. Even if you’re not especially …

Read more"#RareDisease Day: Impossible situations create remarkable people"
#RareDisease Day infographic and talking parent/patient advocacy
Health, patient advocacy, Rare Disease

#RareDisease Day infographic and talking parent/patient advocacy

By Tania Tirraoro February 25, 2015 May 15, 2020

As I’m a fun kind of gal, yesterday I watched the livestream of the #rareEU2015 meeting in Brussels held by EURORDIS, Europe’s rare diseases patient advocacy alliance. Well, listened to …

Read more"#RareDisease Day infographic and talking parent/patient advocacy"
How Jonah’s parents are connecting families with his rare disease -and how you can too
Columnists, Health, patient advocacy, Rare Disease

How Jonah’s parents are connecting families with his rare disease -and how you can too

By Robert Pleticha: RareConnect May 23, 2014 June 29, 2015

As an online manager of international patient communities for many different rare diseases, I receive emails every day from parents and affected people looking for help and information about their …

Read more"How Jonah’s parents are connecting families with his rare disease -and how you can too"
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Recently on SNJ

  • Ofsted: Two-thirds of disabled children “disengaged” from remote learning, while less than half of schools offer extra help
  • Neurodevelopmental Neurodiversity Network: A collaboration to advance understanding of neurodevelopment and neurodiversity
  • If we truly want effective SENCOs, the government must act to make it possible
  • How the National Tutoring Programme can be a powerful tool to help SEND pupils during lockdownHow the National Tutoring Programme can be a powerful tool to help SEND pupils during lockdown
  • How to reclaim a positive mental attitude while parenting in a pandemicHow to reclaim a positive mental attitude while parenting in a pandemic
  • Lockdown 3: What does it mean for the rights of children with SEND?
  • More parents seeking children's mental health support in pandemic, with growing pessimism over support delaysMore parents seeking children’s mental health support in pandemic, with growing pessimism over support delays
  • Your gratitude messages that blew us away after a nightmare yearYour gratitude messages that blew us away after a nightmare year
  • Changing lives with BocciaChanging lives through Boccia
  • Blockbusting: What’s Happened to the £780m in Extra SEND Funding?Blockbusting: What’s Happened to the £780m in Extra SEND Funding?
  • 95% of decisions in favour of parents, but nobody wins at the SEND Tribunal95% of decisions in favour of parents, but nobody wins at the SEND Tribunal
  • MPs call on the government to act quickly on home education register
  • How has coronavirus affected your child’s access to speech and language therapy?
  • Who deserves a special SNJ thank you message for helping your disabled child through 2020?Who deserves a special SNJ thank you message for helping your disabled child through 2020?
  • NEW POST: £300 million for SEND school places. But how does the money on the spending review improve inclusion and equality?£300 million for SEND school places. But how does it improve inclusion and equality?

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