• Crohn’s, diagnosing my daughter.

    by Gail Crampton When my daughter, Isabelle, was 6 she began having severe stomach pains, nausea and no appetite. It would appear and disappear, but each time get progressively worse. We noticed that she was becoming very thin, lethargic and pale. I took her to her GP countless times, she had numerous blood tests and …

    calendarFebruary 16 2020

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  • My experience of being tube fed, by Sam

    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, and I was permanently ill with pain and I was always so tired. At 7yrs old I was fed up of the constant pain and …

    calendarFebruary 12 2020

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  • Diagnosing Ehlers-Danlos Syndromes

    by Caroline Bailey Hi, my name is Caroline, I am 48 years old, married for 25 years and have 3 children, Samuel age 24, Robyn age 20 and Darcey age 15. I also have a stepdaughter age 37 and 2 step granddaughters! I have Ehlers-Danlos Syndrome (EDS), a rare and difficult disease to spot; I …

    calendarFebruary 6 2020

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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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  • Reflections on the rewards of supporting refugee children and families

    by Lynne Awbery, teacher of the deaf. A lawyer from the Democratic Republic of the Congo, a mother from Sudan, a teacher from former Yugoslavia, an architect from Somalia, a doctor from Eritrea, a teenager from Rwanda, a carpenter from Afghanistan, a trafficked mother from Ghana, a housewife, widow and mother from Sri Lanka….. and …

    calendarJanuary 8 2020

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  • Because of Indee, we created a community.

    by Jane Allen, Indee Rose Trust In 2009 we sadly lost our beautiful daughter, Indee Rose, after a short illness diagnosed with a DIPG type brain tumour. At only 3 years of age, Indee showed us positivity, strength and her biggest gift was to show us how to stay happy and laugh her way throughout …

    calendarDecember 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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  • Making changes as a parent by Keighley Miles

    Recently I found out that our local hospital has a CHSWG group (Children hearing services working together) and after attending some working in partnership training with National Deaf Children’s Society (NDCS) I decided to volunteer to become a parent representative. This means at the meeting I can put the parents’ views across and make the …

    calendarDecember 18 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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  • 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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