Talking Sense Spring/Summer 2024

Welcome from the editor, Beatrix Allen

A woman with short hair and a zig-zag t-shirt smiles at the camera.
Sense copywriter and Talking Sense editor, Beatrix.

Cherishing moments of impact

“The nature of joyful moments is that they’re fleeting… being able to cherish those moments of impact and joy, even when you know it’s only going to last for a minute, makes all the difference.”

These words from Sheila, who’s story is featured at the end of this page, explain her adjustment to parenting a disabled child, celebrating a turning point which saw her stop living in fear and start living in the moment. It took time, and she didn’t get there alone.

Many of us experience fear as we grapple with everyday uncertainties. Disabled households often feel these anxieties most acutely, and we know the need for support is great. But as we enter spring, joyful moments start to feel more frequent and positive change more possible. In this issue of Talking Sense, we’re taking pause to cherish achievement and recognise potential – from inspiring volunteer stories to policy ambitions for the next government.

We hear from Maggie about the early days of Sense, and the extraordinary amount of time, goodwill and effort that went into establishing our organisation. Back then, the transformative sum of donations raised by our first TV appeal was counted and cashed by hand! Thankfully, half a decade later things are done a little differently. In our latest TV appearance, BBC Lifeline ran an appeal to raise awareness of our work and inspire support. Thank you to the three families who shared their stories. We also hear stories of inspiring connections. Emma and Ben’s romantic relationship has blossomed in one of our supported living services, with guidance from our expert staff. And Gabby, a phenomenal Sense Virtual Buddy volunteer, has seen her friendship with Chapman enable him to overcome isolation and transform in confidence.

I hope that you enjoy this issue of Talking Sense. If you feel inspired to share your experiences or thoughts with us after reading these fantastic stories, then please do get in touch. Thank you for joining us to cherish these moments of impact.

Beatrix Allen, Editor

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Head over to our blog and discover more stories from people like you. This is our space or sharing experiences of complex disability, deafblindness and updates on all things Sense.

A message from Richard, Chief Executive, Sense and Sense International

A man in a shirt and blazer stands smiling in front of a large building. The sign above the door reads 'Sense charity store and donation station'.
Richard at the opening of our Swindon Sense charity shop.

Over the following pages, a lot is said in testament to the value of connection and collaboration. At Sense, we know the power of working together – not just as staff but as a network with parents, carers and our supporters.

This year, we’re adopting a more collaborative approach to our work than ever before. There will be challenges ahead, but we’ll face them as part of a strong community, one that supports each other by sharing knowledge, asking questions and showing compassion.

As the external environment remains difficult, it’s taking us more time and more hard work to bring about change. I’m enormously proud of all that we’ve achieved in the last year. Despite the ongoing challenges connected to increased costs of living, we’ve extended our reach further than ever before. Sense is now supporting record numbers of people through our services and through our website.

But it’s not enough. For many disabled households, new challenges are appearing at an unprecedented frequency. This has made future planning even more frightening – and support more important than ever. Disabled people want someone to fight their corner, understand the issues they face and champion them.

We know we’ll face uncertainty in what is an election year, but we have a positive future in front of us. As we collaborate and stand together, our challenges ahead seem less daunting.

Find out more about the difference we’re making at

Our year at a glance

  • We increased our reach to 30,000 people and families, that’s 2,000 more than last year.
  • For every pound Sense receives, 78p is spent supporting people who are deafblind or have complex disabilities. The other 22p is put back to work to raise the next pound so we can support even more people and their families.
  • £12.8 million was the total amount raised by amazing supporters like you.
  • 2,100 energetic people got stuck into fundraising activities and helped build awareness.
  • 495 siblings and young carers were supported to take time for themselves and form new friendships.
  • 80,000 of you signed our cost of living petition, calling for greater financial support for disabled households.
  • 5,400 disabled people were empowered to try out inclusive sports and new activities.
  • 351 adults were supported in our accommodation services, up 30% since last year.
  • £3.8 million of the total raised came from 168 generous supporters who remembered us in their Will.
  • 6,000 children and families were shown new ways to communicate, connect and play.
  • 94% of Sense services were rated ‘Good’ or ‘Outstanding’ by the Care Quality Commission.
  • 1 million bags of preloved items were donated to our shops, saving 6,000 tonnes of goods from landfill.
  • 4,600 disabled people joined us for arts and wellbeing activities, twice as many as last year.
  • 142 new adults accessed our supported living, college and day services, smashing our target of 80.

Celebrating the pioneers who built Sense

Maggie joined Sense in 1975, one year after the birth of her daughter, Claudine. We owe so much to this small group of volunteers, all of whom gave an extraordinary amount of time and energy to establish our charity.

In the 1950s and 60s, I’d been shown some shocking instances of children in care. Very little was known about rubella back then, and even less about how to properly care for people who were disabled by the disease.

The images of those visits are imprinted on my brain. When I joined Sense in 1975 (then the ‘National Association Deafblind and Rubella Handicap’ – NADBRH) the people I met were completely devoted to achieving something better for our children. And we were very determined.

The Progress Guide

In 1974, my daughter Claudine was born. I suspected that I’d been in contact with someone who had rubella while I was pregnant. I cried nearly every day of my pregnancy. Like so many other babies, my Claudine was born with very complex disabilities.

A neighbour mentioned the rubella association. I wrote to them and was sent lots of valuable information and contacts. It wasn’t long before I started volunteering time to support their efforts. Some of the members had been part of the first ‘Rubella group’ assembled by Peggy and Peter Freeman in 1955, others were new.

Jim Dale was on the committee with us. He was a Special Educational Needs teacher who’d devoted himself to our cause. He wrote a booklet called ‘The Progress Guide’ which was absolutely fundamental in supporting childhood development.

It provided lists of things that children might do at different stages of their development, with tick boxes next to each milestone. There was guidance on how to help your child along using different methods of stimulation. There was nothing else like it at the time, and it had a profound effect on Claudine. It gave me a direction to go in when so many other voices were telling me there was no hope.

Money to make our dreams a reality

Meanwhile, ‘Sense’ was developing too. One day in 1979, Pryce Owen, our volunteer treasurer, announced that we’d won the Magpie Appeal (Magpie was the ITV equivalent of Blue Peter) – suddenly there was a lot to do!

We had to manually collect and process cash donations raised by the TV appeal. It was incredible, something like £250,000 had been raised – an enormous amount of money. We knew what we wanted: a Family Centre for early years education, and homes for older children to live in. Some of the parents in the group were getting quite elderly, and they wanted to know that there was somewhere for their children to go and be looked after.

It was a remarkable time. We worked so hard to set up ‘NADBRH’ and then, with the funding, we got a new name and became established as a professional body. Sense started to be able to offer the support we’d so hoped for. It was wonderful to see.

For the full story, visit Celebrating the pioneers who built Sense – Sense

Our BBC Lifeline appeal

In March, three fantastic families – all of whom have been supported by Sense for many years – shared their stories on BBC Lifeline, the monthly charity appeal programme. The show aired on BBC One and gave millions of viewers a deeper understanding of the experiences of disabled families, and of the support that Sense provides.

Meet Cameron

Here’s Carla, Cameron’s mum: “I’m really passionate about raising awareness of Cameron’s condition, and its lovely to support Sense when they’ve had such an impact on our lives. When I first thought about how my son, who is deafblind, wouldn’t ever get to see my face, it felt like my heart was ripped out of my chest. Sense gave me a way to understand Cameron’s needs. They’ve been with us ever since, supporting Cameron at school too. Filming can be nerve-wracking, but I felt at ease talking about our journey – and Cameron was a superstar on the day!”

Meet Sonny

Here’s Dan, Sonny’s dad: “Our son is deafblind and, at first, we worried about finding a way to connect with him. Would we ever reach those lovely milestones, like hearing Sonny say “mama” or “dada”? It was scary to think he might never be able to communicate and feel understood. But Sense’s support has been a game-changer. They take such a positive, can-do approach. Soon Sonny was learning symbol-based communication, which helped him explain his feelings and make independent choices. Our world would be very different without Sense. They’re like extended family. We’re excited to share just how fantastic Sense is, although slightly nervous to watch ourselves on TV!”

Meet Verity

Here’s Sarah, Verity’s mum: “I started joining the online early years sessions with Sense when Verity was just a newborn. Four years later, we’re still tuning in! Verity’s deafblind and has complex disabilities, leaving her with limited control over her body. Sense has really opened up the world for Verity. Anne from Sense, who’s known us since the first sessions, has been out to visit Verity’s new schoolteachers to make sure they fully understand her needs. For us as a family, Sense has brought us together. The support made us stronger in terms of our interactions with Verity – long may it continue!”

Watch the appeal film here: BBC Lifeline Appeal 2024 – Sense

We found love – with support from Sense

Emma and Ben live together at Otterhayes, a Sense Supported Living service. They’re both in their early forties and have Down syndrome. Tracy, who leads on identity, sex and relationships work at Sense, meets with them regularly to support them to navigate the ups and downs of their romantic relationship. We chatted with Emma and Ben to find out more.

Emma: Ben and I knew each other before Sense. We went to the same school, so we’ve actually known each other for about 35 years!

Ben: I remember during school breaktime one day, I was about to ask her “Will you be my girlfriend?” but, before I knew it, she’d beaten me! Emma asked me first.

Emma: After school we met again at college, and then again when Ben and I both moved into supported living in the late nineties.

Ben: It was in 2019 that we were able to get our own flat together. We had relationship support from staff, and from Sense when they took over the service a few years later.

Emma: We both wanted to learn more about how to live together and to be there for each other. We have our own bedrooms so we can still have our own space. That means a lot to us. Sense have helped us find the right balance. I like Ben’s company – he brings me tea in bed, and he gives good hugs. We cook and spend time together during the week, and always spend our Friday evenings together.

Ben: On Fridays, Emma comes into my room to watch DVDs and we curl up together, which I like.

Emma: We’d like to go on a date soon, an outing for just us. We’re going to make plans with our Sense staff so we can go to the cinema. Ben was there for me during my hip operation last year. He was also there for me when my dad died. My dad liked Ben a lot.

Ben: I like it when Emma tells me what’s going on with her. We both use our sessions with Tracy to work on being open with each other about what’s going on with us.

Emma: I would like to learn more about talking about feelings, then Ben and I could help each other more. Tracy’s said that wanting to get better at that is normal for lots of couples. There’s lots me and Ben would like to do, and Sense is helping us make more plans for the year. Our relationship is getting better all the time

For the full story, visit We found love, and Sense are supporting us to be there for each other – Sense

Virtual buddying can make a very real difference

Gabby and Chapman found true friendship through Sense Virtual Buddying. Chapman, age 13, is blind and has learning disabilities, he didn’t feel socially confident or connected before meeting Gabby. One year on, Gabby reflects on how much Chapman’s changed, and how happy his progress has made her.

When I first met Chapman, he was very shy. His main interactions at that time were with his family. I think that dealing with all the struggles that come with having complex disabilities, and having recently moved from Hong Kong, affected his confidence.

Virtual buddying was a way for him to explore socially, to have an opportunity to talk to someone new – someone who could show him that they were interested in what he had to say. I wanted to create a safe space for him to open up and express himself. When Sense matched Chapman and I together, it was because we share a musical background. I play flute and Chapman is brilliant at piano. He can learn very complex pieces just from hearing the notes.

We started to play music together on our weekly video calls. He knows he’s talented, so actually this was a great way to start drawing out that more confident side of him. It was brilliant for us to have that shared interest, it really helped overcome those initial communication challenges and build a connection.

From there, we started trying out lots of different activities. We’d play guessing games using recordings of different instruments, animal sounds and daily noises. It’s been really fun exploring Chapman’s interests, doing completely new things like baking and maths games.

After a few months, he really came out of his shell. One day he just burst into song, and now singing is one of our favourite things to do together – even pop songs! Which I never would have guessed from our first interaction.

I’m really glad that I got this opportunity to build a friendship with Chapman. He’s had a big impact on me.

Chapman’s a lot chattier now too, he’s really keen to tell me about his day and share his thoughts with me. He’d never have done that when we first met. His family have noticed a massive change.

It’s really heartwarming to think I had any part to play in that. It’s been a privilege to see him relax and progress. I hope he can take his new-found confidence and keep growing in his independence, and as a person.

For the full story, visit Chapman’s Buddy opened the door to friendship, confidence and even musical collaboration – Sense

Looking for friendship? Sign up to the Sense Virtual Buddying service today and get matched with someone who’ll soon become a special part of your week.

Sense Awards 2023

The incredible achievements of people in our community were put centre-stage at the Sense Awards 2023. Our judging panel of disabled celebrities, influencers and disability activists had a difficult job on their hands! In the virtual ceremony, hosted by disabled broadcaster Samantha Renke, 13 winners were crowned.

Samantha was born with Brittle Bone Condition and is a prominent advocate on disability issues. She said “As I’ve become more involved as a disability rights campaigner, I’ve come to fully understand and feel so much pride in my disability identity.

The Sense Awards are a fantastic way to celebrate the achievements of disabled people and continue to raise our voices.” The Sense Awards, which has been running for 20 years, recognises children and adults with complex disabilities, and those that support them, through a range of awards.

You can find the full list of winners on our website at Sense Awards 2023 – Sense

Journalist of the Year: Reuben Reuter

The young correspondent for Channel 4 News has a real gift for bringing disabled experiences to the fore. In his interviews, guests talk candidly about disability funding cut fears, abortion and the impact of the Covid-19 pandemic. The 23-year-old, who has Down syndrome, is always courageous and insightful.

Reuben told us: “As disabled people, we have important and interesting stories to tell. I feel privileged to help share them with wider TV audiences. You’re never too small to make a difference.”

Fundraiser of the Year: Summa Clarke

Summa took every opportunity to turn her battles into opportunities to support others. When she was diagnosed with a cyst in her brain, Summa decided to do a sponsored head shave before of her surgery. Her autism makes being touched uncomfortable, but she went bravely down to her local Sense charity shop, where she previously volunteered, to have the big haircut!

Summa was inspired to fundraise for Sense as they support her brother Riley, who attends Sense Siblings days. In total, she raised over £1,400 through the challenge. We’re very happy to say that her surgery was successful too!

Summa’s mum, Jennilee, said “Over the years we’ve been told how much she would struggle and how she cannot do things. The more this happens, the more she proves everyone wrong. Summa uses her determination to prove to herself she can and will do anything. I’m very, very proud of Summa.”

Young Sibling of the Year: Thea Nisbet

Thea’s parents nominated her for this award because they wanted her to know how special she is. Sometimes Thea has to put her needs second to her little brother, Troy, who has CHARGE syndrome. He spent six months in intensive care, and during that time Thea bravely lived away from home in a room of a nearby Ronald McDonald House. She now helps her mum and dad give Troy 24-hour care.

Thea’s dad, Max, told us “She’s an incredibly kind and loving big sister. We’re just so proud of her and she deserves to have the spotlight for a bit! We hope this Sense Award will help her see how special she is, and how much she means to all of us.”

Sense Awards 2024

Who would you like to give the special feeling of a Sense Award to? Nominations aren’t open just yet, but it’s not too soon to start making a shortlist of your own!

Find out more at The Sense Awards – Sense

Let’s make this election count for people with complex disabilities

The upcoming General Election will be a major event in UK politics, and the outcome will greatly affect the lives of disabled people. This election is a vital opportunity to call for change.

For too long, people with complex disabilities and their families have been hit hardest by issues ranging from the Covid-19 pandemic to the ongoing cost of living crisis. Despite making up 22% of the population, disabled people often feel overlooked, isolated and left out of life.

That’s why Sense will be calling on the next government to prioritise the needs of disabled people. Our research and conversations with people who have complex disabilities have highlighted a number of key areas where people want to see change.

  1. Financial security
    Disabled people have been disproportionately impacted by the crisis, with many forced to confront agonising decisions. Sense research found that 68% of people with complex disabilities were worried about having to skip meals during the winter, while 66% worried about how they would pay their bills. Whilst the cost-of-living crisis has brought these issues to the fore, we know that disabled people were struggling financially before the crisis began and will be even when it’s ‘over’.  We need to see longer term efforts to address the extra costs disabled people and their families face. This has been a key campaigning area for Sense over the last two years and the next government must provide targeted support for disabled people.
  2. Adult social care
    High quality social care be life-enhancing, promoting independence and opportunity. But too often disabled people simply can’t access the right social care for their needs. Our research found that 1 in 5 people with complex disabilities did not feel they had the right support. The next government should act to tackle an underfunded system and also the workforce crisis within the sector.
  3. Children’s social care
    Too many families are struggling to access social care for their disabled child, putting huge pressure on families. This prevents disabled children from being able to communicate, develop and experience the world. Ensuring that social care is available to families in need must be a priority for the next government.
  4. Special Educational Needs and Disabilities (SEND)
    Inclusive education is important. Too many disabled children are waiting too long for Education, Health and Care plans – even if they get them, the right support isn’t always provided. Enhanced support for children with special educational needs and disabilities is vital if they’re to reach their full potential.
  5. Welfare and employment
    Disabled people are often reliant on a welfare system that doesn’t meet their needs. Urgent reform is necessary. We want to see disabled people getting the support they need easily, including, for those who want it, specialist support to look for work.

Sense is urging all political parties and candidates standing at the next election to champion the needs of people with complex disabilities and their families. We’ll be working hard to make sure that everyone standing in the election knows about what matters to people with complex disabilities. Watch this space for some exciting ways that you can get involved in helping us to get the word out there.

Anna’s story: Why I’m supporting Sense’s plan for change

As a mother and carer of a disabled child, and on behalf of thousands of families like mine, this General Election is such a key moment.

My son, Charlie, has a genetic condition called SPG11. This means he needs a lot of assistance, like an electric wheelchair and hoist, and keeping him warm is vital as he can’t monitor his own body temperature. As a result, our energy bills are excessively high – the money I put on the prepayment meter gets spent straight away.

My situation is not unique. Disabled households like mine are struggling. The next government, whoever it may be, needs to make sure that we’re no longer neglected and left fearing the future.

Last year, I – alongside over 80,000 people – joined Sense to call for more support for disabled people to cope with the cost-of-living crisis. I urge the next government to listen to our call and put disabled people at the heart of everything they do. It’s not fair that disabled people pay the heaviest price.

This is not the only issue facing people with complex disabilities, their families and carers. The adult social care sector is underfunded, children’s social care needs to be prioritised, support for SEND provision is lacking, and the welfare system desperately needs reform.

The Government must grasp this opportunity to make a positive impact on the lives of disabled people.

You gave Khalili a chance to shine!

Khalili faced a challenging start in life. He was born with spine damage and foetal distress, spending his early months in and out of hospitals in Kenya. But today, his mother Saumu tell us, Khalili’s progress is inspiring.

“I took my son to be screened for deafblindness when he was very small. Sense International Kenya’s programme was there to diagnose Khalili, and we received support right away.

Thanks to the therapies, Khalili now actually recognises me as his mother, which fills me with joy. He’s three years old, and he smiles and coos at me when I do the daily therapy exercises with him. I can see lots of positive changes like this. They might seem small, but actually make a big difference to us.

In the beginning, we’d go to our nearest early intervention unit three times per week. Khalili would have therapies to help strengthen his muscles, and we’d do activities with light and audio stimulation too.

Now, I use videos provided by Sense International Kenya every morning to do the exercises with Khalili. He can sit with support, control and support his head, and eat small portions of solid food. Seeing his progress has bought me so much joy. It’s wonderful to hear his laughter!”

Khalili’s story reflects the transformative power of supporting children as soon as we can. During our ‘Chance to Shine’ appeal, between January and March 2020, we raised an astonishing £813,365 – including £383,794 of match funding from the UK government. This funding has been instrumental in providing sight and hearing tests and vital therapies for children in rural Kenya.

We greatly exceeded our sensory screening target, reaching over 84,000 children and identifying 147 who could benefit from specialist early intervention therapy. Each of these families, Khalili’s included, received a tablet from Sense International to aid them with homebased therapies. We understand that our support is vital, but that the costs of visiting a centre can be prohibitive for many families.

Sense International continues to fight for the rights of children and adults with deafblindness. We train health facility staff and community health volunteers, and work to ensure screening and early intervention objectives are part of countywide development plans. With your help, we can give everyone the chance to shine.

Find out more at Sense International

Being enabled to love and cherish my daughter

For Sheila and Peter, the birth of their daughter, Josephine, turned their world upside-down. Due to medical negligence during labour, Josephine was left with very complex disabilities. Sheila has written a book reflecting on this time of monumental adjustment, post-natal PTSD and unshakable parental love.

It’s hard to write a book that’s so personal. There were times when I was desperate and angry – and the book is shocking – but I think that even the most challenging revelations will resonate with some parents.

For 23 years, Josephine and I had a loving mother-daughter relationship, but one with a difference. Due to clinical negligence, my daughter suffered catastrophic brain injury at birth, leading to profound and multiple physical and learning difficulties.

It doesn’t feel like being a “mum”

I thought that instincts would just carry me through whatever parenting Josephine was going to be like. But actually, when you can’t hold your child because the force of their spasticity pushes you away, you can’t use those natural instincts. You’re left trying to find a different approach, and it doesn’t feel like parenting, like being a “mum”.

Sense was a place that cherished our children

In the early years, we learned an immense amount through the Sense Family Centre at Woodside. All the professionals we met there were unbelievable. They just… they learned her. They learned her alongside us, it was a truly collaborative experience. Music was an integral part of our sessions with Sense. It was the time I made the biggest emotional connection to Josephine. When I reread the chapter that I wrote about Woodside, I could recall just what it meant to us. It was a place of solace and comfort – though it was very intense, but magical. It made her life better.

Finding a way to live in the moment

I think it’s probably a common thing for parents to have some level of PTSD after a traumatic birth. I lived in a world of perpetual fear for many years. I could never live in the moment.

For me, getting Eye Movement Desensitisation and Reprocessing (EMDR) therapy made a huge difference. Once I started my recovery, I started to reconnect with myself and be more present with Josephine.

We loved our wee girl deeply. I spent Josephine’s lifetime trying to do what made her happy, but this competed with the emotional pain and suffering I felt as her mother.

The nature of joyful moments is that they’re fleeting, and they’ll be followed by more difficulties. So being able to cherish those moments of impact and joy, even when you know it’s only going to last for a minute, makes all the difference.

For the full story, visit Being enabled to love and cherish my daughter – Sense

Sense advert for ‘Box Hill super climb’

The ultimate closed road repeat elevation challenge

A poster for a cycling challenge event, showing a man cycling hard next to the text 'Box Hill super climb'

Sunday 22 September 2024

Box Hill, Surrey Hills, Surrey

Sign up now at Box Hill Super Climb – Sense