• I am my mum’s carer by Alfie, aged 6.

    Alfie, aged 6, talks about his role as a young carer, looking after his mummy.

    calendarNovember 9 2019

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  • Celebrating autism and neurodiversity!

    For us, there’s so much to celebrate and so much happiness that comes from being around autism and neurodiversity. Richard Nurse, founder of the digital visual timeline app, picturepath, recently asked through Quora ‘why it’s so hard to find the positives in autism?’ Here are some of the great answers he received… “I think it …

    calendarNovember 21 2019

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  • Visiting the doctor or hospital shouldn’t be that difficult – a few simple changes can make all the difference

     By David Bara MEd PGCE BA(HONS) and UN SDG 3 champion. A visit to the doctor or hospital can be challenging if you are relatively healthy but if you are taking a child or adult with additional needs, have access issues yourself, need to juggle multiple appointments or to plan your transport, etc. it can …

    calendarNovember 24 2019

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  • Social Situations – teach your child how you want them to react.

    by Paul Rose of YouTeachMeToo There comes a time when you have to decide: accept the status quo or take positive action. For 12 years I worked in UK schools, including a few years as a headteacher. Despite running a ‘successful’ school, I decided I could no longer watch young people being failed. So I …

    calendarNovember 27 2019

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  • From Cancer to SEND – a bumpy journey of acceptance.

    It can be hard to transition from being a cancer family to a special educational needs and disability family. This is one family's story.

    calendarNovember 30 2019

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  • Hospital Play Workers, more than just a bit of fun!

    by David Bara You might call them play workers, they are the people who you’ll find doing fun things in the hospital play rooms or who come and visit you by your hospital bed with armfuls of stickers, but did you know their proper title is likely to be Health Play Specialists (in the UK) …

    calendarDecember 21 2019

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  • Autism and Accessibility

    by Adam Barrett, Access Social Ltd. Being an older brother I have always been very protective of my little sister. (there’s 4 years difference between the two of us) This protectiveness has definitely been increased to biblical proportions due to her disability. Look at her the wrong way, use inappropriate language in her presence, I’ll …

    calendarJanuary 22 2020

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  • Discovering Ehlers-Danlos Syndromes

    Caroline Bailey talks about her journey to discovering she had Ehlers-Danlos Syndromes (EDS). When I was a little girl I was a little quirky. I remember walking to school with my brother and my mum saying “if you stand on a crack you’ll marry a bat and a rat will come to your wedding” 😂😂. …

    calendarFebruary 3 2020

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  • Diagnosing Ehlers-Danlos Syndrome

    Hi, my name is Caroline Bailey and I have Ehlers-Danlos Syndrome, a rare and difficult disease to spot . I and 48 years old and have been married for 25 years. My 3 children are Samuel age 24, Robyn age 20 and Darcey age 15. I also have a stepdaughter age 37 and 2 step …

    calendarFebruary 6 2020

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  • Tube feeding, my experience by Sam

    14 year old Sam shares his experience of tube feeding and how it has impacted on his life. Tube feeding – first an NG tube I was 7 yrs old when I had my first feeding tube, this was because my body couldn’t absorb all of the essential nutrients that I needed in my diet, …

    calendarFebruary 12 2020

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  • Crohn’s Disease, diagnosing my daughter.

    by Gail Crampton Gail Crampton talks about the journey to diagnose her daughter with Crohn’s disease and why it has led her to campaign and write a book to help others. Crohn’s – it started with stomach pains When my daughter, Isabelle, was 6 she began having severe stomach pains, nausea and no appetite. It …

    calendarFebruary 16 2020

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  • Moles Can’t Play Hide and Seek

    Astrid Middleton describes her journey with the genetic eye condition retinitis pigmentosa. She also describes her and her son's attitudes to their neurodiversity and how they own it. This is what prompted her to write children's stories about being included and she shares one with us here.

    calendarMarch 2 2020

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  • Rodney, the hare that didn’t care (but he did really)

    Gail Crampton talks about her book, Rodney the hare that didn’t care (but he did really). She explains why she wrote it to help children with hidden illnesses and medical conditions, and how important it is. It started with Crohns Rodney Meadow-Hopper, The Hare Who Didn’t Care (but he did really), was released at the …

    calendarMarch 4 2020

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    Mitrofanoff – what??

    By Aimee King I have just had yet another exhausting conversation with a medical professional who knows nothing about my mitrofanoff, telling me all about it. Now I understand that not many health care workers will know about my condition, but why not? something like a simple UTI which, trust me, I know a lot …

    calendarMarch 17 2020

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  • Supercharged Superhero

    A story about Myalgic Encephalomyelitis and hidden illness. Gemma Everson talks about her husband’s diagnosis of Myalgic Encephalomyelitis; how it impacted on her family and led her to write a children’s book. Our story began in July 2017. We had just welcomed our second daughter, Gracie, into our family and life was seemingly perfect. I …

    calendarApril 9 2020

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  • Keanu’s Story – a story of Juvenile Epilepsy.

    Stacey Smiley talks about her son, Keanu's, journey with epilepsy from the age of 1 to now, 5 years later. She talks about his diagnosis, what impact it had on Keanu and about discovering the epilepsy was caused by a CHD2 gene mutation. Stacey also gives some useful tips on how to interract with people with hidden disabilities.

    calendarMay 17 2020

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    Keanu’s Clubfoot

    Stacey Smiler explains what clubfoot (talipes) is. She describes her reaction to finding out her son's diagnosis and Keanu's subsequent treatment.

    calendarJuly 20 2020

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  • FND Dimensions

    Steve Webster, founder of FND Dimensions talks about the charity's work to raise awareness of Functional Neurological Disorders and provides support services to help patients deal with and understand their condition.

    calendarAugust 15 2020

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  • Cystic Fibrosis throughout history: how has life expectancy gone from being 14 years old to 40 years old?

    Using Cystic Fibrosis as an example, Isobelle Moores discusses how developments in science other the years have impacted on the lives of many people with life changing conditions.

    calendarOctober 8 2020

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  • It all changed with one stroke

    Adele Ramet describes how her life suddenly changed from being active and independent to suddenly needing full time care following a devastating stroke.

    calendarOctober 20 2020

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    The beauty of Music Therapy

    In this blog we talk about the benefits of music therapy and how it can support individuals with additional needs.

    calendarFebruary 23 2021

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  • Autistic Burnout

    Karen McGuinness from West Cheshire Autism Hub describes autistic burnout and explains what people can do to help prevent it.

    calendarMarch 18 2021

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  • Tourette’s Syndrome

    Tourette's and existing services in the UK, she is now campaigning to raise awareness about this very misunderstood condition. Here she explains what Tourette's Syndrome is, what it is like living with the condition and about the campaign.

    calendarSeptember 21 2021

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  • Life with hidden disabilities

    Sarah* is a student at university who also has a caring responsibility for her younger brother. He . He has been diagnosed with Post-Traumatic Stress Disorder (PTSD), Anxiety, Depression, Psychosis and Attention Deficit Hyperactivity Disorder (ADHD). Here she talks about her brother's needs, how he hides his mental health illnesses and what support he needs.

    calendarDecember 17 2021

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