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. 

Bringing the values back into volunteering

A man standing up holding hands with two men who are sitting in wheelchairs.

Richard has been CEO at Sense and Sense International since 2018. He shares his experiences of volunteering and why he thinks it’s so important.

Before Covid-19, volunteering participation in the UK had remained largely static over the last ten years. There wasn’t sufficient noise about the value of volunteering on volunteers, charities and the wider society. There was insufficient evidence about the impact of volunteering.

Since the pandemic, the community response has been exceptional. And there’s better understanding of the people around us, like the impact of loneliness on an older person, or that an adult with sensory impairments can struggle to get to their shops. 

We can’t let that feeling go 

If we want mass volunteering to become the norm, we need to start planning now. This means embracing new, flexible forms of volunteering and integrating them into all services and programmes developed by charities.

And if we want to get the best from our sector, we mustn’t forget to get the best out of our volunteers. Not everyone wants to be recognised or thanked – but recognition and saying thank you is so important. 

Volunteering is incredibly powerful 

As we start Volunteers Week, my views on volunteering have been heavily informed by my time as a volunteer for Sense. I recall at my first Sense holiday, how one of our holiday makers, Suzie had her first experience of the seaside in Bournemouth.

She felt the texture of the sand, the salty taste of the sea and the wind on her face. For her, these were new and powerfully stimulating experiences. After the time we spent at the seaside, Suzie went and sat in the lounge before dinner and she giggled and erupted into fits of laughter for more than 30 minutes recalling the enjoyment in her own personal world.

Often, volunteering means celebrating an individual’s very heightened personal experiences and particular methods of communication. And when we connect like that with another person, we reveal new capacities not just in them, but in ourselves.

Every time I volunteer I discover new personal strengths as I put others first, and this is a reminder of how I can make the most of these qualities in my day to day work.

Keeping the sense of community

We must never compromise on the values behind volunteering. Volunteering gives meaning and purpose and joy and a sense of community. We must always remember that.

We can sustain this feeling of shared and collective effort to help others in need. Communities that have come together in challenging times can continue to support one another as things get better again.

The more we support each other, the more we gain ourselves.

Become a Sense volunteer

Interested in volunteering for Sense? You could become a volunteer in one of in our charity shops, on Sense Holidays our even in our community fundraising team.

10 years since the Winterbourne View abuse case: what have we learnt?

Close up of two people holding hands.

Steven works on our campaigns and influences government so they better represent people with complex disabilities. He takes a look at the scandal at Winterbourne View residential home 10 years on.  

In June 2011, I, like many others, watched in horror as undercover footage for BBC Panorama showed the systematic abuse suffered by people living at Winterbourne View, a residential care home for people with learning disabilities near Bristol.  

The undercover footage showed residents being slapped, having their hair pulled, being verbally abused and held down while forced to take medication. Although the support workers involved rightly faced prosecution, the scandal raised wider questions about the care of people with learning disabilities and/or autism that, 10 years on, haven’t been answered. 

They promised lessons would be learnt following the uncovering of what was going on at Winterbourne View, and in 2012 the government launched an urgent review. They recognised that a hospital is not a home and promised to transfer 3,500 people in similar hospitals to community-based care. This meant that individuals could live closer to or at home while accessing support and services in their local area.  

More care in the community is needed for people with learning disabilities 

People with learning disabilities and/or autism should only be staying for long periods of time in hospitals or in-patient settings, in exceptional circumstances, such as for urgent mental health support. Speaking at the time, the Health Minister Norman Lamb promised a dramatic reduction in the number of people living in hospitals. He also said that many of the residents at Winterbourne View should not have been there in the first place and that this was the case across the country.  

We need more action to make care delivered in the community a reality. While we’ve seen a recognition that care and support delivered in the community is more beneficial for individuals, we need to see greater action to make this a reality for all people with learning disabilities and/or autism.  

In 2017, I watched Channel 4’s Dispatches programme about the issue. I watched with mounting dismay as it showed that people were still being held in hospitals or care homes that don’t meet their needs or, in some cases, even keep them safe.  

In 2019, we heard the story of Bethany, an autistic teenager who was held ‘in a cell for two years’. She received no therapeutic care while in hospital.  

Too many people remain in inappropriate residential settings or hospitals 

Over 2,000 people remain in in-patient settings with over 60% of these people having been there for over two years. People in places like this are often a long way from family. They’re often at risk of receiving insufficient care. 

I’m not suggesting that the kind of abuse we saw at Winterbourne View is prevalent — the majority of staff who work in such settings are dedicated and caring professionals. But we do need to see people with learning disabilities and/or autism supported to access the care they need in the community so they can live the lives they choose.  

Good quality care and support, like the type Sense prides itself on, can stop people from being admitted to hospital in the first place. But more recognition and resource for these services is needed.  

It’s a shocking indictment of our health and social care system, that ten years on from Winterbourne View, we are yet to see the change needed. 

Join us to campaign for change 

Become a Sense campaigner so we can make sure that people with complex disabilities get the support they deserve. You’ll join the Sense campaigns network and get all the latest on our campaigns for the rights of people living with complex disabilities to take part in life. 

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. 

When will the government turn its promises of social care reform into action?

Two women and a man stand outside the Houses of Parliament holding Sense placards, whilst a girl in a wheelchair sits next to them.

Sarah, our Head of Policy, Public Affairs and Research, explains the need for the government to get on with reforming social care.

If you switched on the television this morning you might have seen the coverage of the Queen in the Houses of Parliament, joined by lots of people in funny outfits, carrying the crown on a big cushion and banging on doors. Though it might seem like a weird ritual, it’s an important part of our country and how it runs – it was the state opening of parliament and the Queen’s speech.  

The Queen’s speech and opening of parliament is a bit like the start of a new term at school. The Queen is like the headteacher, setting out what work will be covered and what should be achieved.  For organisations like Sense, it’s an opportunity for us to hear what the Government plans to work on over the next few months, things like new laws or changes to policies.

The lack of government response to social care is unacceptable

Like many people, I watched the Queen’s speech today and wondered if social care would be mentioned.  We’ve been waiting for social care reform for many years, but it hasn’t yet happened.

We see the reality of this every day: too many people with complex disabilities and their families unable to access their local communities, communicate and connect. Too little support for family carers, unable to get the respite they need. Too little equipment, support, and services to provide care. 

This is unacceptable. 

So what did we get in the speech?  One sentence: “proposals on social care reform will be brought forward”.  

That was it.

On the face of it, this might sound positive, but we’ve been here before – this was said in the Queen’s speech 2019, and the Prime Minister made a promise on the steps of Downing Street but still we haven’t seen anything.

But in the run-up to the Queen’s speech, there was a lot of coverage in the media about disagreements over social care between government departments. For too long, disabled people and others who use social care have fallen through the cracks of disagreements and debate with no action taken. 

Reform would transform the lives of people who use social care

At Sense, we know that the last year has been extremely challenging for everyone and that the government has had many pressing priorities. But this isn’t an excuse to delay reform again; it’s an opportunity to bring it forward and to transform the lives of people who use social care. 

The pandemic has shown us how vital front-line staff are and the valuable role that social care provides, but it’s also highlighted how far behind social care is.

We had to fight to get testing, vaccines and PPE for services that support disabled people and social care. Those who work in these services simply don’t receive the same level of support as the NHS. 

For Sense, there are some key things we want to see these reforms do:

  • Bring more funding for social care services so that everyone can have their needs met
  • Make sure that disabled people are included and considered in all plans to bring change, not just older people
  • Recognise the incredible work that frontline staff provide and address the inequalities they face

So come on government, let’s turn promises of reform into action and let’s do it now. Disabled people have been waiting far too long and they deserve so much better.

Join us to campaign for change

If you agree with us that it’s time to stop delaying social care reform, become a Sense campaigner. You’ll join the Sense campaigns network and get all the latest on our campaigns for the rights of people living with complex disabilities to take part in life.

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!”