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.

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

Headshot of a man smiling at the camera.

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.

I experienced loneliness after the loss of my mother

Ian Capon standing outside in the street.

Ian lives on the Isle of Wight and was diagnosed with Congenital Rubella Syndrome (CRS) when he was a baby.

When my mother died in 2017, I realised how much I had depended on her for care, support and social interaction.

She gave me a lot of support. I live alone in a bungalow and I’m here on my own much of the time. Because of the restrictions of the pandemic, I don’t really see many people.

Living on the Isle of Wight, I’m fortunate to live near my sisters who I can visit for dinner or go out with for walks. Before the pandemic, I could also keep myself busy through my voluntary work.

It would have been very difficult without the voluntary work; I would have lived a much lonelier life. The only way to get over my mum passing was through voluntary work.

Loneliness can affect health and wellbeing

I was fostered at 10 days old with little information about my birth mother. Soon after my I was fostered, my sister noticed a problem with my eye. After tests, I was diagnosed with Congenital Rubella Syndrome (CRS); a condition that could have been prevented with a simple vaccine.

CRS usually occurs when a mother contracts Rubella during her first trimester in pregnancy. It can cause sensorineural deafness, eye abnormalities and congenital heart disease.

My experience of loneliness after the loss of my mother gave me a deeper understanding of what many people with disabilities face.

The impact of loneliness can be significant for many people, especially older, as well as some disabled people. Anxiousness and boredom can be bad for health and wellbeing.

Due to this, I’m an active campaigner for disability awareness to improve public attitudes. This includes things like more community activities, access to work and employment and financial support.

Changing perceptions of people with disabilities

At the start of the pandemic in 2020, my main source of social interaction, volunteering work, was gone overnight. Thankfully, my family were close by, but access to essential services was limited.

I was lucky enough to maintain my family links but getting in food and essentials was not easy during the first couple of weeks.

My experience of disability and isolation has made me an advocate for the people in my community and I’m working hard to change the public’s perceptions of people with disabilities. I previously supported in Sense’s 2017 loneliness campaign and, due to the current pandemic, feel that now is an important time to tackle this issue again.

The number of ways Sense supports people is really astounding. From Communicator Guides to help people access the community to children’s services, there is something for everyone in the Sense family.

While the majority of the public are isolated, I know that people with disabilities have been experiencing loneliness far before the pandemic.

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

I would love for life to become more accessible now everyone has felt loneliness in the pandemic

A woman standing behind a podium making a speech.

Molly, from Maidenhead in Berkshire, was born severely deaf. At the age of 12, she was diagnosed with Usher syndrome, a condition which causes gradual sight and hearing loss.

My name is Molly, I’m 26 years old and I have a condition called Usher syndrome, which causes deafblindness and has no cure to date.

I’m director of Molly Watt Talks, a usability and accessibility consulting group, and co-founder of the Molly Watt Trust, a non-profit helping to raise awareness about Usher syndrome and provide access to technology. I also work part time as an accessibility and usability specialist in Nexer’s design team in the UK.

I’m also a motivational speaker, author and illustrator of two anti-bullying children’s books, and an avid blogger.

Passionate about accessibility and using assistive technology to enhance the lives of people living with life-changing conditions, I’m really proud to have spoken at Houses of Parliament, Spotify and many other tech organisations.

I’ve experienced loneliness throughout my life as my disabilities can affect my confidence.

After almost a year of lockdowns and social distancing measures, the pandemic has limited my connection to others. I can no longer meet with my friends, clients or colleagues, which has affected my overall wellbeing. However, I’ve always tried to make the most of what I can with the tools I have at home, and luckily I’ve been able to work from home all the way through the pandemic.

I’m very sad that lots of my work travelling has had to be postponed or cancelled. I’m dependent on routine and structure, socialising on a weekend helps to break up the week and allows for things to look forward to.

It’s so important to connect with people, have a laugh, and get a chance to relax. Currently, it’s just a lonely, open-ended blur.

Making life more accessible to combat loneliness

I’ve been involved with Sense for a number of years now. While I haven’t always been supported by them, I can see the value of the work they do and services they offer people who are disabled.

Simple things like going to the post office people can take for granted, which can be difficult for someone with disabilities, are suddenly made so much easier with the right tools and awareness.

I rely on public transport in my daily life and think improvements to make transport services more accessible would help my confidence to go out and gain more independence. Along with this, more community resources openly available and designed to be digitally accessible for all assistive tools.

Being able to access the local community, sports sessions, and even navigating the world of education and work does a lot to combat loneliness and the feelings of low self-esteem.

I was able to access many of these things prior to lockdown, and with the correct support and tools I was able to be more independent and of course, less lonely.

Knowing that I can count on Sense, should I need to, gives me the confidence I need to tackle the challenges in my way.

With the world growing more digitally inclined, I feel things will be gradually become more accessible, and life would hopefully improve for people who have disabilities.

Non-disabled people can possibly now empathise more with how people with disabilities can face both digital and environmental exclusion, social separation and lack of independence.

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

Invisible disabilities – Karolina Pakenaite on her experience of the pandemic

Thursday 3 December marks International Day of People with Disabilities, and this year’s theme, ‘Not all Disabilities are Visible’ focuses on spreading awareness and understanding of disabilities that are not immediately apparent, such as mental illness, chronic pain, sight or hearing impairments.

To mark the day, we spoke to Sense supporter and campaigner Karolina, who’s been working with us to raise awareness around face covering exemptions, about her experience of the pandemic.

Karolina and her guide dog standing in front of a piece of street art - a painting of wings.

Tell us a bit about yourself and what it’s like living with an invisible disability:

My name is Karolina and I was born Hard of Hearing. I grew up in both the deaf and hearing world as I went to a deaf nursery and was always part of some deaf community, but spent all of my education in mainstream schools. I started to lose my peripheral sight at around age 19. I became embarrassingly clumsy and, after being referred to a specialist, found out that I have Ushers Type 2A. Three years later I got registered Severely Sight Impaired (blind) as my tunnel vision became very narrow and I could see almost nothing in the dark.

Usher syndrome is an inherited, genetic condition. The main symptoms are hearing loss and sight loss, and, in some cases, balance difficulties. Everybody with Usher syndrome experiences the condition in a different way and it also changes over time.

Turning my sight loss journey into something positive and empowering is very important to me and I feel really happy to say that I recently passed my PhD confirmation exam and research on tactile images for the visually impaired; something that’s both very interesting and personal to me.

A graphic with a picture of Karolina and the quote: "Turning my sight loss journey into something positive and empowering is very important to me"

Even to this day, I often forget that I have sight loss because the changes to my condition happen slowly over time and my guide dog is so good at his job. This can make it extremely hard to ask for help when I feel I need it or explain my condition to those who ask. Part of the condition means that I often get ringing noises, flashes and floaters in my eyes, but these have been always part of me, and something I   find quite stimulating and therapeutic. The changes were normal to me and I knew no other normal. I was always very independent and one of the biggest challenges with having an invisible disability is asking for help.

What has your experience of the Covid-19 pandemic been like as a disabled person? Has anything been particularly challenging? Any positive experiences, of people being particularly supportive for example?

The introduction of face coverings has been a new challenge for everyone to get used to and this is even harder when you have an invisible disability. There is still a lack of awareness that exemptions exist for a range of people including those who have a disability – you can read more about the face covering exemptions here.

Unfortunately, back in July I experienced an incident when I was challenged while travelling on a train when my sister removed her face mask temporarily so I could lip read. One of the challenges of having an invisible disability is it’s not immediately obvious to other people and this is something many people with invisible illnesses experience. I made a video recording the experience and worked with Sense to raise awareness in the media. The purpose of the video was not only to bring awareness of those who are exempt, as I am certain that most of us are doing everything they can to do their part, but also to bring a little reminder to stay kind during this difficult time.

Despite this negative experience, many people have also been very understanding. It’s so nice whenever someone points to their mask to ask if they should lower their mask when they realise I need a bit more help, especially when I am very independent and asking for help can be very hard. This always makes me warm and fuzzy and end up wanting to hug them for their kindness. Little things can mean so much to me.

Another positive experience has been at University of Bath – my department has arranged British Sign Language lessons so I can stay connected with everyone when we return to work wearing masks. It has been so fun and its one of the perfect skills to (re)learn over lockdown!

Has your experience of being challenged about face coverings in July changed anything?

I am used to being challenged or discriminated and as my disability is invisible, I’ve learnt to be a bit more forgiving. One thing I learnt came from the reaction to my video – many made nice, supportive comments, but there were quite a few very confused. It made me feel a little fragile, knowing how I could meet these people in person but I guess it was worth speaking up in the end as awareness was clearly needed.

If you could give others advice on how best to support someone with an invisible disability, what would this be?

Everyone is different so what works for me might not work for others or might not be as helpful as it is to me. So I cannot speak for everyone, but one thing I think everyone appreciates during this difficult time is kindness.


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Why I’m calling on Matt Hancock to meet with Sense

Selfie of two men standing next to each other. One of the men, Saeed, is handing in an open letter to Secretary of State for Health and Social Care Matt Hancock.
Saeed, right, and his son Azhar.

My name’s Saeed and since August I’ve been campaigning with Sense and other families caring for disabled adults, calling on government to reintroduce the community services that stopped as a result of the pandemic. 

Continue reading “Why I’m calling on Matt Hancock to meet with Sense”

As government push for all children to return to school, disabled children are once again left behind

Purple brushstroke drawing of a school building. As government push for all children to return to school, disabled children are once again left behind.

As schools and education centres across the UK re-open their doors along with most of society, through our services and engagement with parents and families, we’re seeing disabled children once again being left behind in their battle to access a full education.

Continue reading “As government push for all children to return to school, disabled children are once again left behind”

What is the plan for social care?

Two men sitting outside talking. What is the plan for social care?

The pandemic has had a devastating impact on social care and the people who rely on it. At Sense, our Forgotten Families campaign has revealed that a third (34%) of families with a disabled loved one still have not had any care or support reinstated since lockdown has been lifted. The Government has received considerable criticism from the press and Parliament for how it has handled support for social care. As a result, Government has released a new plan for the winter which sets out how social care will get the funding and resources it needs. What does this mean for Sense and the people we support?

Continue reading “What is the plan for social care?”

Disabled adults and their families remain forgotten in government’s plan to get society back to normal

A man and a woman sitting at a kitchen table looking at the camera. Disabled adults and their families remain forgotten in plan to get society back to normal

Through our Forgotten Families campaign we’ve been highlighting the experience of Jane’s family, who’ve been struggling to support their 20-year-old daughter Faith throughout the pandemic without support. But we know Jane and Faith aren’t the only family dealing with the devastating impact of having their support withdrawn overnight. Our recent research, showed that 75% of those who had support withdrawn didn’t receive any warning before this happened, and a third of families are still waiting for any support to be reinstated.

Continue reading “Disabled adults and their families remain forgotten in government’s plan to get society back to normal”