Saying thank you this Volunteers’ Week

A man walking down the street with his buddy. Both men are smiling at each other.

Charlotte leads our volunteer involvement across Sense. She talks about how vital volunteers are to Sense and the challenges we’ve faced over the last year.

This Volunteers’ Week I’m feeling especially grateful for the amazing people who volunteer at Sense.

I’ve been overwhelmed by our volunteer’s support over the last year. Our brilliant volunteers have stuck with Sense through the pandemic and the many changes that it’s brought.

But how has volunteering at Sense changed during the pandemic?

Well, we’ve had to adapt a lot! It’s meant adapting our face-to-face roles to virtual opportunities, and creating new volunteering opportunities, such as Virtual Buddying and community volunteering roles in our Sense Fundraising Groups. We’ve developed more flexible ways of volunteering to make it easier for people to get involved.

Keeping our charity shops going through lockdown 

Over 1,000 fantastic people volunteer in our charity shops across England and Wales. Due to various lockdowns, our charity shops have closed and reopened three times in the last year, and I think it’s incredible that our volunteers have stuck with us through this time. It’s also been a real pleasure to welcome a number of new volunteers to our shops.

Volunteering in the shops looks different to before (think more PPE and less hand shaking), but this hasn’t dampened the enthusiasm of our volunteers!   

When I started volunteering with Sense back in 2014, I didn’t think it would lead me to where I am today. I had just moved in with my partner and left my old job in retail. Walking down the high street presented me with plenty of opportunities but none seemed to really fit. When I went into the Sense shop, it felt like another world. It was big and busy with friendly staff and I knew that this is where I would like to spend my time.

Sense volunteer

Staying connected virtually 

For a while, the pandemic put to stop to any face-to-face volunteering, which led to a lot of social isolation and loneliness. But how did we get around this and make sure people with complex disabilities were keeping connected?

We were really excited to launch our Virtual Buddying service last June. This matches a disabled person with a volunteer to socialise virtually – something we all got used to last year.

70 volunteers got involved in this great new initiative and meet up virtually with their buddies to bake cakes, take part in exercise classes, play games, watch films and craft together – to name just some of the activities!  

Volunteering is always a challenge for me as there isn’t much free time at university. When I received the email about Sense Buddying, I decided to make time for the things I am passionate about. Being a buddy for a young person is a huge responsibility but for me, it is so meaningful. Just taking the time to talk, has helped my young person to feel less isolated and alone. I am so happy I made the decision to volunteer for Sense and hope it will continue for years to come.

Sense volunteer
Two young women sitting at a table smiling at the camera. There's arts and crafts materials on the table and one of the women is holding a paint brush.

Getting back to face-to-face support 

Our face-to-face buddying activities adapted over the last year so we could still virtually support young people across East London.

Now restrictions are lifting and buddies can start to do lots of great activities together, like having fun their local parks and having a nice meal in a café.

Reducing loneliness and building confidence have just been two of the great ways our buddying programme has impacted the young people’s lives. I’ve been so inspired to see this support continue over the past year.

You can’t underestimate what an impact you will have on your buddy’s life, you can be their role model and form part of their support system and help them build more independence. In addition, the time you spend with your buddy might be the only time during the week their parents/carers have to themselves which is really valued. 

Sense volunteer

Volunteers are a key part of our Sense Holidays, and we were disappointed that we couldn’t run our Sense Holidays last year. This year they’re back on, and I can’t wait to hear all of the fun activities our volunteers get up to.

Could you be a Sense volunteer? 

We’re always looking for new volunteers to join our team and support people with complex disabilities. Why not find out more about how you could get involved. 

Our daughter has a rare chromosome disorder. Finding Sense was the best thing we did

A little girl sitting on grass. She's wearing a pink coat and red glasses.

Six-year-old Tilly is supported by Sense, and has a rare chromosome disorder causing poor vision, hearing loss and learning difficulties. Her mum, Louise, explains how Sense have supported Tilly and her family during lockdown. 

When Tilly was three months old, a paediatrician noticed she hadn’t reached some of her milestones. After running some tests, the hospital told us that she has a rare chromosome disorder, as well as having very poor vision. By the time Tilly was three years old, she was also diagnosed with some hearing loss.  

It was around this time that we started going to sessions at the Sense Woodside Family Centre. We were still taking Tilly to a baby sensory group and was looking for other groups for older children, where she could get the sensory stimulation she loved.  

I was quite nervous about reaching out and meeting other people, but honestly, it’s the best thing we did. I wish I’d gone before. Once I plucked up the courage to go to Sense Woodside we just haven’t looked back. 

Sense Woodside supported Tilly to develop 

When we first started going to Sense Woodside as a family, Tilly wasn’t able to participate in the sessions, and she loved lying on the floor and looking at the bright lights. But going to the sessions had such a positive impact on us as a family because we suddenly found ourselves with people who knew what we were going through.

It’s been amazing to work with the Sense team to develop Tilly’s communication. Before, she couldn’t communicate with us but Caitlin, a Sense Children and Family Support Worker, is supporting Tilly to learn to sign. 

Nowadays Tilly is very playful, she’s got such a bubbly, friendly personality. She likes throwing balls and watching them roll down things, anything with movement really. And she loves music. 

A little girl in a wheelchair sitting at a kitchen table watching a laptop. She has a smile on her face.

During the pandemic, we carried on taking part online 

When the first lockdown was announced last year, I was really worried. I just didn’t know how it would impact on us as a family, what the impact would be on Tilly and her health, and I was worried about feeling isolated.  

During the pandemic we’ve carried on taking part in Sense family sessions online. At first it was difficult for Tilly to engage with online sessions, but she soon became used to her new routine and now loves taking part in the songs. 

Nursey rhymes like Wheels on the Bus and Wind the Bobbin Up are two of her favourites. Each session the team sing a welcome song to each child, and Tilly gets very excited and uses the ‘T’ sign to introduce herself. 

We were also sent some craft kits at Christmas which were brilliant, as well as some sensory toys. It’s great to have something for Tilly to smell or touch to get all her senses involved. 

Sense has helped us to keep connected to other families during the pandemic. The team have supported Tilly to keep connected with her friends. Just knowing that the support is there and that we can join in at any point is so helpful. 

Donate to our spring appeal 

Children who are deafblind or have complex disabilities need Sense through each new chapter of their lives, and it’s your support that makes this possible. 

It was hard work to teach Sense Sign School but I enjoyed it!

A young man standing in front of seats in a sports stadium. He's smiling with his arms in the air, and he's holding a trophy.

Our Sense Sign School hero Tyrese Dibba has won a Pride of Birmingham Award. How amazing is that?!

When we launched Sense Sign School, a series of free online lessons teaching British Sign Language (BSL), last May, we had no idea how crazy things would get. The programme helped 80,000 people learn sign language during lockdown.

And the key to it all? One inspiring 15-year-old called Tyrese Dibba (better known as Mr. Tyrese by his students!).

Tyrese was the star of the show. And now, the jokes and cheeky demeanour that inspired thousands to learn have won him the Stephen Sutton Inspiration Award at the 2021 Pride of Birmingham Awards.

The Pride of Birmingham Awards celebrate the city’s unsung heroes, including those who have made a positive impact during the pandemic, and Tyrese’s impact couldn’t be more positive.

It’s every football fan’s dream to meet their favourite team, and as part of the awards Tyrese got to do just that. Tyrese had an amazing time meeting Conor Coady, the Wolverhampton Football Team Captain, even teaching him a few signs.

We’ve heard from Tyrese, and he’s thrilled to have the award. He told us:

“Thank you. I’m happy I won. It was hard work to teach everyone sign but I enjoyed it! I loved meeting Conor Coady as part of the awards and loved showing him some signs, like how to spell his name, his sign name and his shirt number.”

Supported by Sense

A young man wearing a suit and tie standing next to his mother. There's a blackboard next to them with the words 'Sense Sign School with Mr. Tyrese' written on it.

Tyrese has been part of the Sense family for years. Since he was six months old, Sense has been supporting him to do fantastic things, like having lots of fun on a Sense Holiday and learning how to communicate using BSL, gesture and writing.

Like all of us at Sense, Tyrese’s mother, Vicky, is really proud of her son. Tyrese’s cheeky character certainly brought a smile to everyone’s face in a long lockdown, but what other effect does Vicky think Sense Sign School has had?

She explained, “Ty was really shocked and surprised about winning a Pride of Birmingham Award.

“As for me, I’m very proud of Tyrese; he made Sense Sign School his own, showing his pride in his language and culture.”

Don’t miss class!

It’s not too late to learn BSL with Mr. Tyrese. Join today to find out how amazing he is.

Sense’s activity resources helped fill time for my daughter in lockdown

Sarah explains how Sense’s activity resources have helped fill her daughter Phoebe’s time in lockdown.

I’m Sarah, married to Andrew and we have two daughters. Our youngest daughter, Phoebe is 20 and has a rare chromosome disorder called Pitt Hopkins Syndrome. She is lucky enough to attend Sense College at Rothwell on their education pathway, for 3 days each week. Sense College offers personalised learning for young people with complex disabilities, aged between 16 and 25.

Phoebe enjoys a course of sports activities

We’ve received support from Sense, especially over the last 12 months while we have been shielding with Phoebe. The college has been keeping in regular contact and we have received activities to do from college and from the Sense arts, sports and wellbeing team.

When we were in lockdown, filling our time was hard, so Sense’s activities were great. Just following a programme while in lockdown was useful, and we were so grateful to have so much to choose from, what to repeat, and how we could adapt the suggestions for Phoebe.

Over the last few months, every two weeks we were excited to receive emails from Sense, with activities to do. I took a bit of time to work out which were appropriate for us and then got to work gathering the resources before then working out our week and where we would fit the activities in. 

Sense’s new activity finder makes it easier than ever to find accessible things to do that get you motivated to move, create and explore! Check out anything from sensory sport to inclusive relaxation and music.

Our ambitious new strategy will see us deliver vital support to more people than ever before

Two men in conversation outside

It was vital 65 years ago when two mothers, Peggy Freeman and Margaret Brock, founded Sense to deliver support to families and children with deafblindness.  

And it is vital today, establishing ourselves as the leading charity for disabled people with complex needs, and their families, in the UK.  

The impact of the coronavirus pandemic, which created unprecedented challenges for society, has been acute for disabled people and their families. 

The pandemic crisis exacerbated existing barriers disabled people face and exposed new issues.  

Throughout, I have been proud of the passion and commitment of Sense staff to meet the changing needs of the children, adults and families we support, embracing new ways of working and developing new services. 

We know, however, as the country takes its cautious first steps out of lockdown, that many people with complex disabilities, including those who are deafblind, still miss out on the vital support that they need. 

That’s why we’re launching our refreshed five-year strategy (2021 to 2026), setting out how we plan to reach more people than ever before. Our plans attempt to embrace the passion and commitment of our staff and take the best of what we have learnt over the past year as we look ahead to a better future. 

We believe that no one, no matter how complex their disabilities, should be left out, isolated, or unable to fulfil their potential.  We want to ensure that more people get the support they need and can live life to the full. 

A smiling man supporting a young man with complex disabilities

Four outcomes of our new strategy

To achieve this, our work over the next five years will prioritise four strategic outcomes: 

  1. We will work to ensure the best possible start for children and families. 

    This will include extending our reach to support 30,000 children and families over a five-year period, developing new programmes and scaling up online provision.  

  2. We will do more to support adults to live and learn at every stage of their lives. 

    This will include growing our housing, day opportunities, colleges and community-based services, so children, young people and adults can access support at our sites or in their local communities. 

  3. We will strive to reduce loneliness and isolation.   

    This will include generating new social connections for more than 30,000 people over a five-year period, including 5,000 through our buddy service, which connects disabled and non-disabled volunteers, and over 1,000 siblings, many of whom are young carers.

  4. We will give people a voice which would otherwise be unheard and change our wider society by inspiring more people to take-action in support of our cause. 

    This will include increasing our number of supporters to over 250,000, creating more operational roles for our volunteers, and opening more retail spaces, generating greater awareness and connections with local communities.  
A man supports a man with complex disabilities to eat his lunch

Join our mission to make sure no one is left out of life

Our strategy is a call to action to everyone who shares our vision, that no one, no matter how complex their disabilities, should be isolated, left out, or unable to fulfil their potential. 

Everyone connected to Sense, be it our staff, volunteers or supporters, and of course, the families and individuals we support, are urged to come together in pursuit of our shared aim.  

Now is the moment to make a difference. 

Keep up to date on our progress and find out how you can support Sense.

Support for Ted and Ernie!

Ernie was diagnosed with Down’s syndrome and has been supported by Sense for a number of years, always with his brother Ted, for support by his side. During the lockdown, both brothers have managed to make the most of everything Sense has to offer.  Ted and Ernie’s mum Helen, tells us all about the support they’ve all been receiving.

Brothers Ted and Ernie posing for a photograph together.
Continue reading “Support for Ted and Ernie!”

Zach’s Story

Zach and Luca’s mum Faye tells us about the incredible bond between the brothers. Luca has CHARGE syndrome and Zach, along with his family care for Luca.

Faye talks about how over lockdown, Zach has benefitted from online sessions offered by Sense, when his football for example stopped.

Zachary has always been absolutely amazing with his little brother, Luca. As a mother, I couldn’t be prouder of him but, I always felt a pang of guilt that I could never spend as much time with him has I do with Luca. You see, Luca was born with CHARGE syndrome which is a rare genetic condition that affects his vision, hearing and balance. Sense and other organisations have been there for Luca, but it always left me wondering, who was there for Zach.

Zach and Luca sitting under a tree in the woods
Continue reading “Zach’s Story”

I’ve spent years living an isolated life, but the pandemic has increased my loneliness

A man kneeling down stroking a cat in a garden.

Ian, 42, is from Rochford, Essex, and has Usher syndrome. His work as a photographer came to a complete stop during the pandemic, leaving him more isolated.

My name is Ian, I’m a photographer from Rochford, Essex, and I have Usher syndrome. This is a progressive condition which causes deafness and gradual sight loss.

I’ve experienced loneliness throughout my life, but the pandemic has magnified my sense of isolation. I live alone with my cat, Teddy, who has been a “saviour” for me in these difficult times.  

The pandemic made me feel absolutely petrified because I’ve spent years living an isolated life, knowing what it can to you and your mental health. Loneliness affects everything – you stop functioning as a human being.

My photography work came to a complete stop due to the pandemic, which has further increased my sense of isolation. 

The only time I go out is for essential shopping. I don’t have a set routine anymore and I’m not seeing people regularly. When you’re blind, you live a very isolated lifestyle already, so being able to go out and meet other people is essential to your connection.

I believe that raising greater awareness about disability and improving accessibility will help to create a more inclusive society where disabled people feel less lonely. 

Despite all the struggles of the last year, I’m feeling hopeful about the future and looking forward to connecting with others again. I’m drawing from my past experience with isolation to get through this pandemic. I’m taking each day as it comes and looking ahead to the spring and summer for more light.

Sign our pledge and join us in taking action to make sure that no one is left out of life.

One year on since the UK’s first lockdown

Two young men sitting next to each other. One is talking whilst the other young man smiles.

This last year has been difficult for so many people around the world. The news has been dominated by coronavirus and it feels like the lockdowns have lasted a lifetime.

However, while the pandemic has raged on, there’s been moments of hope and joy. People have connected in ways that were unimaginable a year ago and we’ve supported each other to find those little moments of happiness.

At Sense, we’ve worked hard to make sure that we’re adapting the way in which we support people with complex disabilities and their families.

Friends reuniting after lockdown

There’s been numerous moments that have challenged us and, on quiet reflection, made us stronger.

After a year of lockdowns, we’d like to celebrate the reunion of two best friends, Asif and Ashton, who have formed a bubble together. Watch the video below to see them meeting again for the first time since lockdown.

Keeping connected during lockdown

Asif and Ashton’s families kept them connected during lockdown with video calls. Their familes have seen the positive impact their friendship has had on their wellbeing. Some of their family members share how happy they are that the friends have been reunited.

Lynn, Ashton’s mum, is pleased the friends can meet in person

“They’ve always been so lovely together. They’re just like two old men. We’ve tried to keep them connected during lockdown with video calls and Ashton would have his ear on my phone. Now Asif is back at Sense, Ashton is full of smiles.

The past year has been very hard. Ashton likes to be doing things. He likes to be out. We go to the park and he likes to throw the ball for the dog. He can’t walk long distances, so we’ll do a walk with the wheelchair. We take drinks and crisps, but he needs to see people.

He’s very tactile and loves hugging. There’s no social distancing with him. That’s been really hard.

We’re lucky that we had an allotment and things to amuse him here. He’s just a very friendly social lad and he does love his best friend.

I love it that Ashton and Asif are back together. I’m overjoyed and he’s just so happy. For me it’s lovely that he’s going somewhere nice and seeing his friends.”

Two young men sitting at a piano laughing.

Saima, Asif’s sister, can see how happy he is after lockdown

“For us, the past year we’ve been keeping it really basic. Asif just stayed at home most of the time. There were occasions where he did have Zoom catch ups with a few of his friends but it’s just not the same being in person.

He really misses that independence and that routine. It was a struggle. He really misses just being at Sense and that space where he can be expressive.

Now he’s back, he’s just extremely happy. We understand that he missed going to Sense and Ashton, but we didn’t appreciate to what extent.

When he first went, he came back so happy. When he attended, I remember picking him up and he was so happy to have seen Ashton. I remember seeing him just laughing. As a family, it makes us so happy to see him like this.

When we told him that he was going to get the vaccine, Asif put two and two together and he knew that he’d go back to Sense.

Asif is just a happy young guy. For the family, we’re just so grateful and indebted to Sense for keeping in contact with him.’

Sign our pledge and join us in taking action to make sure that no one is left out of life.