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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All I want for Christmas is a solution for social care

Another year ends without a long-term sustainable funding solution for social care. Last week, Minister for Care, Caroline Dinenage, quietly confirmed that the Social Care Green Paper will be delayed until January 2019.

I’m deeply disappointed, yet sadly not surprised, that the Social Care Green Paper has not arrived in time for Christmas. It is one of many crucial reforms side lined by the Brexit chaos, along with the NHS Long Term plan.

For over a year the government has repeated it’s tired old mantra, that the green paper is ‘coming soon’. A government that really wants to solve the social care crisis finds a way; those that don’t, find excuses.

Further excuses and delays will mean disabled people don’t receive good quality care or are unable to access the care they need. It leaves more and more disabled people at crisis point and increasingly reliant on NHS services which are already under pressure.

At this point in time, the crumbling social care sector has neither a long-term or short-term funding solution. The Autumn Budget delivered nothing but a £650 million temporary sticking plaster, only a quarter of the money needed to solve the social care crisis. Meanwhile, many disabled people have been left struggling due to the lack of urgency the government has shown this issue.

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Sense has played a part in helping us move out of the darkness and enjoy Mia for who she is now

A child looks towards a shining star on a stick
Mia at the Mini-Magpies group

My daughter Mia, who is two-years-old, has a rare genetic condition, which causes epilepsy and severe developmental delay. Her condition also affects her motor skills and muscle tone, so she’s unable to feed herself and it’s unlikely she’ll ever be able to walk.

Mia also has a visual processing condition which means although her eyes can see, her brain is unable to process the information. She can distinguish between light and dark, but she can’t see detail, so going into darkness can be distressing for her as she struggles to understand what’s happening.

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How our inclusive sports day created opportunities for disabled people to be active

A smiling man with a woman playing table tennis

There are so many benefits for disabled people to be active; increased confidence, making social connections, reducing loneliness, and increased motor skills, to name a few. These are all benefits we’ve witnessed first-hand through our Sense Sports sessions.

But there are also barriers to participation that exist. From perception about what disabled people are capable of, through to practical barriers such as accessibility of venues, transportation, and familiarity of the environment.

So as a new Regional Sports Co-ordinator, having been in post with the Sense Sports team less than three months, I was excited and admittedly a little nervous to be organising my first inclusive sports event, to help raise awareness about inclusive and accessible sport and activities.

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I always leave a Sense Holiday looking forward to doing another

A smiling man and boy

I first heard about Sense from my dad who has volunteered with with the charity for years. He told me about how good they were and thought I should give it a go, so I did! That was around 2012, and since then I’ve volunteered on several Sense Holidays. I’ve been to lots of great places all over England with Sense – from little cottage holidays to activity centres and lots more.

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