Sense blog | connecting sight, sound and life

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 wo 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.

Sign up to Sense Sign School

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.

Find your next activity

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

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:

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.
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.
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.
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.

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

5 things research tells us about disabled people’s lives in 2021

I’m Rachael and I work in Sense’s policy, public affairs and research team. My job is to make sure that we understand how disabilities affect people’s lives through research. And that means that I’m always looking for the latest data.

Here’s 5 things we’ve learnt from research so far this year.

1. The number of disabled people in the UK is growing

To make sure we’re working for disabled people, it’s important to know just how many people are affected in the UK. The latest figures released last week in the Government Family Resources Survey show that there are now 14.1 million disabled people in the UK, which means that 1 in every 5 people are disabled.

2. Many aspects of life have changed due to the pandemic

Life has been very different for everyone in the last year or so. But research by the Office for National Statistics found that the impacts of the pandemic are especially far reaching for disabled people. About a third (32%) of people say that their health is being affected, a third (34%) say their relationships have been affected and a quarter (27%) having limited access to groceries, medication and essentials.

Sense’s Forgotten Families research last year found that community support reductions were having a big impact on disabled people and their families and these new figures show that not much has changed since then.

3. There’s still a big gap in the number of employed disabled people compared to non-disabled people

Disabled people can face many barriers in getting into and staying in work. Unfortunately, the latest research by the ONS found that only just over half of disabled people (52%) aged 16 to 64 years are in employment compared with around 8 in 10 (81%) of non-disabled people. The better news is that this gap is narrower for some groups for example, 72% of people with hearing loss are in employment, as are 57% of people with sight loss.

4. Loneliness is having a big impact on disabled people’s health

The pandemic has shown how loneliness can affect everyone. As we exit lockdown, thousands of disabled people still face loneliness and isolation every day.

A poll of 1,000 disabled people by Sense found that 61% are always or often lonely. Even before the pandemic, 33% would be limited to having under an hour interaction with someone else each day and 70% say that social isolation is now affecting their mental health. Sense’s Left out of life campaign is all about tackling social isolation and loneliness. If you agree that no one should be left out of life, make sure you sign our pledge now.

5. Disabled people have lower health and wellbeing levels than non-disabled people

Disabled people rate themselves lower for happiness, life satisfaction and how worthwhile they think their lives are, compared to non-disabled people. Average anxiety levels were higher for disabled people. For example, 30% of disabled adults report low levels of happiness compared to 13% of non-disabled adults.

At Sense we believe that no one, no matter how complex their disabilities, should be isolated, left out, or unable to fulfil their potential. This research is just the first step. Next, we’ll use the research findings to campaign to improve lives. And you can help.

Get involved by visiting our campaigns hub, and sign up to our campaigns updates.

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.

I’ve haven’t been out since the pandemic started nearly a year ago

Darran Thomas, 46, from Brynmawr in South Wales, started to lose his vision ten years ago when he was diagnosed with a genetic eye disorder.

One of the biggest impacts of getting a diagnosis was having to leave my job. It was one of my main forms of social interaction as I live alone.

Although I had lots of support from my friends and family, I’ve experienced so much isolation and loneliness since losing my sight.

Before the outbreak of Covid-19, I’d spend six hours a week with my Communicator Guide from Sense to go shopping, to the cinema or the theatre.

But, since the pandemic began, I’ve had to shield due to health issues and now only go out for medical appointments.

It’s the loss of little things, like meeting friends and going for days out, that’s had a big impact on me. I was used to living alone, but I could still make plans when I wanted to.

All of a sudden, it was like a shutter came down and it all totally disappeared.

Providing socially distanced support

My family live nearby so they can bring me meals and I can chat to them through the window, but I’m definitely missing days out and visiting my friends.

I’ve not been able to go out for nearly a year and it’s quite difficult and depressing.

I miss being out and about and the feeling of being in different environments. I miss going to the theatre more than anything – I love the sound and the experience of it.

I’m still supported by my Sense Communicator Guide in a socially distanced way and for that, I’m so grateful. She delivers my shopping, medicine and post and we can chat over the phone.

I know my Communicator Guide is still there for me in whatever way she can be, and that really helps. You build up trust which is so important because you’re relying on them to be your eyes. She’s not just someone who supports me, she’s also a friend. Sense has made a real difference.

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