Hidden amongst the noise of political chaos in the Houses of Parliament was the loss of yet another Minister for Disabled People

One person holds another person's hand.

And so ends another week of political chaos in the Houses of Parliament. Hidden amongst the noise was the loss of yet another Minister for Disabled People. Sarah Newton, who had held the position since November 2017, resigned her post in order to vote how she felt led, in one of the many Brexit votes that have taken place this week. 

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#MKruns262 update no. 2: Interviewing Sense CEO, Richard Kramer

Image shows a person running from behind, wearing a red coat on the ground. In the background is the skyline of London

The following blog was written by Marcel in his monthly #MKruns262 series. He interviewed our CEO, Richard Kramer and talks about his biggest fitness challenge yet — running the London Marathon 2019 for Sense.

You can find the original blog here.

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Peggy, Margaret and Jessica – three Sense pioneers

Sense is a unique national organisation. It serves people with complex  disabilities, including deafblindness, and has developed unrivalled skills and experience in this area.

But it has also been shaped by broader changes and developments in society – such as changing attitudes towards disability and the role of women.

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There was a connection felt by the runners, the people being supported, staff and me

(#TeamSense London Marathon runners before they took on their 5km around Finsbury Park)

Last weekend, I went to the London Marathon training day, with some of the people we support from TouchBase South East. This April, #TeamSense will be taking on the 2019 London Marathon, to help us support children and adults with complex disabilities, including those who are deafblind, to communicate and experience the world.

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A year of When I’m Gone

Keith (the father) is sitting in a chair in the background and Geordie a young boy sits playing with a spring toy

Today marks the one year anniversary of our When I’m Gone campaign.

There are approximately 1.7 million disabled adults being cared for by family or friends who provide support day-in and day-out, with little opportunity or time to have a break. As many of these family carers get older, they might begin to think about “What will happen to my loved one when I’m gone?” And for many, the answer is unclear. This is why we launched When I’m Gone in February 2018 – to help disabled people and their families plan for the future and give them much-needed peace of mind.

As part of the campaign we spoke to many families and disabled people and from the beginning, we found that a great deal of them didn’t know where to start when it came to planning for the future or felt overwhelmed by the prospect of thinking what to plan for and look towards. Worryingly, we found that one third of councils do not know how many disabled people who live in their area rely on friends and family for their care and support. Additionally only a quarter of councils routinely support families to make contingency plans for future care options.

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National Storytelling Week

Sense 6 word story competition. National Storytelling Week on orange backgroundIntroduction

Welcome to the storytelling competition with a twist. Legend has it that Ernest Hemmingway, while having lunch with his friends, placed a bet that he could create a story in just six words. While the group were placing their money in the centre of the table, Hemmingway wrote his story on a napkin. He then passed the napkin around the table and proceeded to collect his winnings. His friends were in shock as they passed the napkin which read:

‘For sale: baby shoes, never worn.’

This is a challenge to anyone and everyone expanding on Hemmingway’s initial idea. Who among you can tell the best six word story using any format? These stories can be told in braille, sign, pictures or any form of communication. Have a look below to see how you can get involved.

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Joe’s Story – Unable to talk, it was thought he couldn’t learn, but with amazing new technology, Joe discovered his potential!

Joe smiling in his chair

In the words of his mum, Joe is like a magnet; he’s fun and people and animals just love being with him. Yet life is a challenge for Joe.

He is a wheelchair user and has several serious health and medical conditions, including severe curvature of the spine, epilepsy and just one lung that only works at a quarter of its capacity. He has a diagnosis of cerebral palsy, which causes difficulty for Joe in using his arms and legs.

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Eve’s Story – She lost her sight, lost her confidence, but with the help of Sense she got her old self back

Lady sitting in chair and smilingEve

I grew up in Bethnal Green and was an only child. My father died suddenly two months before I was born, so when I was born, I only had my Mum and my Nan. My Nan brought me up because Mum had to work. That’s just how it was.

I grew up with hearing problems, during the Blitz in London. I’d be in a shelter, laying there while they put drops in my ears and the bombs were falling. It was a nightmare. So I’ve been hard of hearing my whole life, but it just got worse as I got older.

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Luca’s Story – How a child born deafblind learned to communicate with the world

A boy with a Santa hat on in a wheelchair
Luca

I first met Faye and Ben, Luca’s mum and dad, in hospital on the day Luca was born – I happened to be there visiting another child. He had just been diagnosed with CHARGE syndrome, a rare genetic condition that affects his ability to see, hear and balance. Faye and Ben were terrified he wouldn’t be able to communicate, or enjoy things that other children do.Luca’s three now and it’s been a hard road for the whole family, he was in hospital for the first eight months of his life. But, thanks to the generosity of our wonderful supporters, we’ve been there every step of the way to help Luca to connect with the world.

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‘Loneliness is not somebody else’s problem’

Hands holding

In 2018 we all became worried about loneliness. It is not a new problem. But last year and thanks to the Jo Cox Commission, the Minister for Loneliness, the Campaign to End Loneliness, the disability sector working together, and countless other organisations, it has become an urgent one. We also have

our first Loneliness Strategy. 2019 is the year in which we seek to tackle the loneliness epidemic.

There are 9 million of people in the UK who are lonely. We have an increased understanding that loneliness is bad for individuals and communities. We know that the feeling of being by oneself with no one to rely on, to talk to, or to share life with causes pain.

Why is that? On the one hand, we have a desire for company. We want to be part of a group. We know social life is a benign power. But sometimes it feels we were put on this world to remain separate from one another, rather than come together as a community. Instead we nourish human suffering and loneliness.

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