I had falls with my baby daughter in my arms. It was very scary – #100days100stories

Imagine being trapped in your home, alone, knowing you can’t safely care for your two small children. This was Soña’s experience last year, when her funding for a support worker was cut overnight. She has shared her story in an interview as part of our 100 Days, 100 Stories campaign.

Soña, who has cerebral palsy, was struggling to care for her small daughters, three-year-old Natalie and Mary, aged one.

Proud mum smiling at her three-year-old daughter
Soña with her three-year-old daughter Natalie

A support worker visited two hours each day to help her get out of the house, lift Mary, and take Natalie to nursery. It made a big difference, but it just wasn’t enough. Soña’s condition was getting worse and she was worried for the safety of her children.

“I cannot use my left hand at all, and my left leg is a few inches shorter than my right which makes walking difficult,” says Soña. “I’d get so tired just trying to walk from place to place, and I would lose my balance.

“I couldn’t go out with the children alone – I’d end up overturning their pushchair, and it would be dangerous.”

Devastating news

When Soña asked for extra support from her local authority, she was given shocking news. An official explained there had been a mistake with her case – she wasn’t entitled to any funding any more.

Couple in their thirties talking at a table
Soña and her husband, Adam

The family’s support was cut overnight. Soña’s husband Adam works 14-hour shifts as a delivery driver, so she was left at home alone with the children every day.

“I knew that this was not right,” says Soña. “Mary was only about nine months old, and I was starting to have major back problems and spasms.

“I was having constant accidents – I would fall several times a day and get slammed against the door or the wall. I dropped Mary a number of times, which was very scary.”

Struggling on alone

Soña tried again and again to explain why she needed support, but was repeatedly ignored. One professional suggested that if Soña couldn’t cope, Adam should give up work and become her unpaid carer.

“There was no compassion whatsoever. You’re made to feel like you’re making something up. Why would you make it up?

“I felt very vulnerable, here by myself. I was really upset and stressed. All I wanted was to be able to take my children outside, but I was basically trapped in my own house.”

After months of frustration, Soña called Scope’s helpline and spoke to one of our advisors. Realising it was a complex case, the advisor referred her to Karin, a regional response worker.

“I was quite desperate by then,” Soña says. “My situation was getting worse, and I felt like no one wanted to help me.”

Taking control

Karin came to visit Soña at her home and they talked through what had happened. She drafted letters, contacted experts to ask for legal advice, and accompanied Soña to meetings with the authority.

Two women having a conversation on a sofa
Karin, a regional response worker from Scope, with Soña

“We worked together very closely. Karin was always there to help, or to find someone to help me. She constantly reassured me I was doing okay.

“It kept me going, basically. Everyone kept shutting me down, and I was feeling like: maybe I don’t deserve this. To know there is someone out there who actually does support you made a big difference.”

When Soña finally decided to take legal action, Karin helped her apply for legal aid. Soña found a solicitor to argue her case.

“It took six months, but the outcome was absolutely mind-boggling,” she says. “I ended up getting 30 hours’ worth of support a week, far more than before. I couldn’t believe it. I’d been told for so long that I didn’t need anything.

Sona and Mary with Dor, their support worker
Sona and Mary with Dor, their support worker

“Now my carer comes for six hours a day to help me get the girls ready for nursery. We can go out and do the shopping, or take Mary to an appointment. I don’t feel like I’m a prisoner in my own home.

“Without Karin, I would still be stuck at home by myself, struggling. You need support when you’re in this situation, you can’t do it alone.

“I was made to feel like getting social care was a privilege, but it’s not. I need it just so I can have a life.”

If you’ve had a similar experience with social care, you can make a difference by sharing your story as part of our 100 Days, 100 Stories campaign. Please contact us on  stories@scope.org.uk if you’d like to get involved.

Now we know Leo’s going to be fine – #100days100stories

Leo is a happy three-year-old who loves to give hugs and kisses. He has cerebral palsy which affects his co-ordin​ation and movement. Leo’s mum Lyn has shared her experiences as part of Scope’s 100 days, 100 stories campaign.

Lyn helps three-year-old Leo with his homework
Lyn helps three-year-old Leo with his homework

It was a difficult birth and they took Leo off to do tests straight away. He had a chest infection and he wasn’t breathing right.

Leo had to stay in hospital until Christmas Eve, and we didn’t even go out to get presents that year.

Something wasn’t right

Over the next year, we noticed he wasn’t doing things that other children did. Then, when Leo was two, he had an MRI scan. When they told me it was cerebral palsy, I couldn’t take it in. I was really, really shocked. I blamed myself.

At first I didn’t want to let Leo out of my sight, worrying constantly that he was in pain. I knew so little about cerebral palsy. I needed help but I didn’t know where to turn. Thankfully, our paediatrician told us about Scope.

We needed practical support and advice

One of Scope’s support workers, Ian, came to see us and that’s when things really began to change for our family.

Ian drives a car. He has a great job. And he has cerebral palsy. I needed to see that Leo would be able to do all those things too. Ian gave us lots of practical support and advice about things. We could ask him anything and he’d tell us the truth, never skirting around the issue.

We’re optimistic for the future

Lyn and husband Kevin holding Leo and a baby
Lyn and her husband Kevin with Leo and their baby Lucien

These days Leo is so full of life, outgoing and gregarious. His confidence and sense of adventure are growing all the time.

When I think back to that first Christmas with Leo, I’m amazed at how things have changed. We don’t know what Leo’s future is going to be. But we’re so much more optimistic now. We know he’s going to be fine. If we hadn’t had support from Scope, we’d still be wondering.

Lyn and Leo’s Scope response worker Ian has also shared his story as part of our 100 days, 100 stories campaign. Read the rest of our stories so far and find out how you can get involved

Disability Innovations: Simple solutions for unsteady hands

Disability Innovations is a blog series that gathers some of the most interesting new products and services that aim to make disabled people’s lives easier. We hope it will inspire more innovation in the disability field.

HandSteady

HandSteady is a cup designed especially for people with arthritis, tremors, muscle weakness or limited dexterity, to help reduce spills when drinking and increase independence.

The magic behind it is almost too simple… the HandSteady cup has a rotatable handle. The cup is the brainchild of Chris Peacock who came up with the idea after he noticed how difficult and often painful it proved for a family member who had tremors, to enjoy the British institution that is the cup of tea. This was down to the design of the traditional cup, made from heavy ceramic, with small fixed handles, which has to be held at a vertical angle to avoid spillages.

The HandSteady design

Chris’ new design aims to combat the difficulties associated with the traditional cup and was created alongside health experts and people with long-term physical conditions.

Made from lightweight plastic, the cup is much lighter than a standard cup and the rotating handle is designed to keep the cup upright, but also makes it much easier to tip the cup to drink, without the need to bend your wrist or lift your arm. It is designed to counteract any unwanted motion associated with a number of health conditions such as arthritis or tremors and to reduce the pain and effort required to drink, for less spills and more control.

For use on the go, there is also a hidden lid accessory which can be used as a travel cup or to hold a straw. Plus it makes it easier and requires less effort to drink when lying down as you can hold the mug at a comfortable side angle. It can even be used one handed giving users more independence to drink unaided.

The best bit is that it looks like your average cup made from bone china and nothing like a toddler’s sippy cup, but with all the added benefits and its dishwasher safe.

How does it work? (the technical bit!)

The cup’s handle can rotate a full 360 degrees and uses gravity to keep it upright, so the user can hold it at whatever angle is most comfortable for them, meaning even if your hand shakes, the cup doesn’t. The handle can be used upside down, which lowers the cup’s centre of gravity below the hand, giving it even greater stability. The oversized handle also spreads the pressure of the cup’s weight across the hand and is large enough to hold with all 4 fingers, making it easier to hold.

Where can I get my hands on one?

The cup is available to buy online for £40, including the lid, and comes with a 12 month warranty and a 30 day money back guarantee, if it doesn’t work for you. Chris is committed to lowering the price of the cup and having seen the impact it can have on people’s lives is working to make it readily available on the high street.

HandSteady have just launched a crowdfunding pre-order campaign where they are hoping to get enough backers to raise £10,000 and make a bulk order to reduce the price down to £15.

Why we like it

We love how simple this design is and that it does what it says on the tin! It’s a great reminder that innovation isn’t always about brand new technologies, and that the smallest of tweaks can have a huge impact and dramatically increase independence.

This product has incorporated both great engineering and great design and yet is still both practical and portable! We also really like how Chris is using crowdfunding as a way for people to pre-order cups to help drive the price down. That’s innovation fueling innovation right there!

This blog is for information only. Scope does not endorse this product or service. We try to make sure our information is up to date and accurate at the time of publishing.

To tell us about a Disability Innovation, please email innovation@scope.org.uk.

Volunteering helped me get the job – #100days100stories

Lesley, 54, moved to South Wales a few years ago to be closer to family. She had spent 20 years out of work because of a repetitive strain injury. It was through her involvement with Scope that she gained the confidence and skills to secure a full time job. Here Lesley shares her story as part of Scope’s 100 days, 100 stories campaign.

The last time I worked was in 1993 for a social services department, caring for elderly people. I gave up work as I had repetitive strain injury (RSI) in my wrist.

I had always done some volunteering with local charities and when I moved to South Wales in 2012, I wanted to continue to do voluntary work.

I knew I wanted to work with vulnerable adults, probably in a caring or support worker role. It was through the return to work scheme I was on that I learnt about Scope. I asked if I could find out more information and I met with a Scope worker, Carol.

Volunteering with Scope

Carol and I agreed that I would go to her regular cinema activity and see how we got on. I really liked the group and they seemed to like me, so I started as a regular volunteer.

We would go for lunch, to the cinema and bowling and I would be supporting disabled adults to take part in the activities.

I got particularly friendly with one woman who had epilepsy and we would meet and go for lunch. Once someone asked her who I was, and I introduced myself as her friend. It was really nice the way it happened, as she was a private person.

Learning new skills

Volunteering has really helped me to learn new skills. I did lots of courses including ‘Working with Vulnerable Adults,’ ‘Epilepsy and Autism Awareness’ and ‘Food Hygeine’.

I got a certificate for each course which gave me the proof to take to employers that I had completed the course.

Finding work

I recently went on a person-centred planning training day and while I was there, I said I was a volunteer for Scope and that I really wanted a job in care work. When we stopped for a break a woman approached me and said she worked for a company who provided care support.

By the end of the day I had been invited to an interview with them and I am delighted to say they offered me a job. I have to do four days training with them before I start working, and once my checks and references are in place I will be an employee.

I’d definitely recommend people to volunteer for Scope. Especially if, like me, you have a disability and are looking to move into employment. Volunteering definitely helped me to get the job. I had the training, experience and skills the employer was looking for.

Find out more about volunteering at Scope.

Read more of our 100 stories so far, and see how you can get involved