Jai’s Journey

Jai standing with his mother, Pam, and they are holding a certificate with a Sense Teddy bear.
Jai standing with his mother, Pam, and they are holding a certificate with a Sense Teddy bear.

Sleigh bells weren’t the only chimes heard in December as the world was gearing up for the festive season. Down a colourful corridor in Coventry Hospital, one bell rang out the louder than most.

Four years ago, Jai was diagnosed with Alstrom Syndrome which is one of the rarest genetic diseases in the world. Not only does it affect your vision and hearing but also makes you susceptible to other conditions such as diabetes. Since the diagnosis, Sense was there to support Jai and Pam through all that was to come.

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2019 – A Year In Review

CEO, Richard Kramer on the left and Lord Levy on the right
CEO, Richard Kramer on the left and Lord Levy on the right

It’s been a busy year for Sense, and as 2019 draws to a close, it’s important to reflect on what’s been achieved over the last 12 months!

No one left out of life

At the beginning of the year, we launched our new strategy, No one left out of life, with ambitious goals for the people we support.

In what continues to be a challenging environment in all three of the areas Sense operates in: Charity, Social Care and Retail, I am proud to say we have continued to expand our services, meeting the needs of an even greater number of people, without compromising on our high standards.  We are very proud of our record in social care. It also means our campaigning work is more credible as it is rooted in the views of those we support and their families, and from our expertise as a service provider.

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Safeguarding: what does it mean to you?

This week is National Adults Safeguarding Week. The aim of the week is to create conversations and spread awareness about keeping vulnerable adults safe from abuse.

Adult Safeguarding, as defined by the 2014 Care Act is “working with adults with care and support needs to keep them safe from abuse or neglect.” It is an important part of what many public services do, and a key responsibility of local authorities.

Organisations take different approaches to implementing this into everyday support. We asked what safeguarding means to a selection of senior managers, as well as our Sense User Reference Group (SURG). SURG gives people living with complex disabilities the opportunity to share their views of Sense and our services.

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We don’t need to nourish human suffering and loneliness.

A man sitting along on a wall wearing jeans and a striped top

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.

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You will never see plant life in the same way again!

A woman touching a plant with some headphones on and a man is guiding her.

Sense, Birmingham Botanical Gardens & artist Justin Wiggan have been working together on ‘Sensory Beings: Internal Garden’ funded by Grow Wild. Everything we do at Sense is inspired by the people we support. Sense Arts creates a more equal platform where everyone has the time and space to take part, in whatever way they want. Sensory Beings: Internal Garden is the next chapter of Sense Arts Inclusive Arts Strategy, ‘Space to be Different’.

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Sense Awards – 1 month on

Group photo of the Sense Awards winners stood outdoors holding their awards.
Group photo of the Sense Awards winners.

The Sense Awards are a highlight of the year for many of us, myself included, and this year’s event was no exception. Our annual awards, now in their 16th year, are about recognising and valuing the people around us and the difference they make, whether they are a staff member, volunteer, an individual we support or their family carer or sibling. It’s important that we take time out as an organisation to recognise everyone’s contribution and celebrate their successes.

This year’s awards were very special again and below are just some of my personal highlights.

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The State of Care

Two people holding hands and doing hand on hand signing.

On his first day in office Prime Minister Boris Johnson promised “we will fix the social care crisis once and for all”. Nearly three months later we’re still waiting for a solution. This week the Queen’s Speech to Parliament, which set out the Government’s plans for new laws and policies, only made a vague promise that “Government will bring forward proposals to reform adult social care”. Meanwhile more disabled people and their families are reaching crisis point without the right support.

In the State of Care report published this week, the Care Quality Commission (CQC), who are responsible for regulating health and care services, concluded that many people are struggling to access the care that they need. The State of Care report analyses CQC inspection data, as well as service user experiences and focus groups to provide an annual picture of health and care services. Although the quality of many services remains stable, there are considerable challenges around people navigating the system.

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Café 55: The number one place for coffee, cake and community!

Cafe 55 street sign.
Cafe 55 street sign.

Right by Exeter Central Station, supported by a Roman Wall, sits a 120-year-old chapel. While this sounds like something out of The Da Vinci Code, the mystery is solved as soon as you walk through the front door. Cafe 55 feels more like someone’s living room than your standard café. There are books on the wall and the hypnotising smell of fresh chocolate brownies. It took a generous Sense supporter to leave a gift in their will before the café could start and, it has taken the centre manager, Jane, nearly 10 years to get it to where it is today.

Officially open in 2010, Café 55 started as a trial project funded by a supporter’s gift in their Will. Jane was hired to run the project and initially it was open one day a week. As it grew more popular, they expanded to three times a week. The idea behind Café 55 was to create a safe space for anyone (connected to Sense or not) to come, relax and eat. It was to provide work experience and life skills to people supported by Sense.

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Sign Language is International

Learn 5 simple signs

Hello everyone. My name is Anna and I have been profoundly deaf since birth. I have been working at Sense for 12 years now and absolutely love it. Before Sense, I had a number of other roles, but Sense has been the most deaf aware organisation I have worked for. It could just be the changing of the times but I know that Sense takes its communication very seriously.

While I have a great manager and a great team, there is one thing I would change. I wish everyone would learn just a bit of sign language. Now this isn’t just the office but when I am out in public too. The funny thing is most people don’t realise that they use sign language every day. When they are waving hello or giving someone the ‘thumbs up’.

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A gift for two brothers!

George and his brother, Jon.

Sense TouchBase South East stands at the top of a hill, tucked away from the busy high street in Barnet. For over ten years, I have been commuting to this now retired battery factory to support people who are deafblind or have complex disabilities, and although it has existed for a quarter of a century, every day feels new. The centre was initially funded by a gift in a Will from a generous Sense supporter. TouchBase South East has been a gift to so many families, including my own.

My brother George is a year younger than me. I think most people can tell that we are brothers straight away but George is slightly different to me. He has a number of health conditions that have caused learning disabilities, visual, hearing and physical impairments, and epilepsy. With all of this, George is understandably very hesitant when meeting new people and going to new places. He is more than happy sitting on the sofa with our mum watching ‘Only Fools and Horses’.

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