Tag Archives: mobility

“I have a love-hate relationship with my benefits”

Josie, from Bristol, was a nurse until 2008 where she developed a number of impairments which affect her health and mobility.

She has most recently been diagnosed with Mast Cell Activation, a condition which affects immunity and increases the chances of anaphylaxis attacks.

In this blog, she talks about her journey of getting different benefits she needs and the anxious days where her payments stopped completely.

I have a love-hate relationship with my benefits. I am grateful that they exist and that I can live as a disabled person, but I was a worker and I still find it hard that I can’t earn my own money.

When I became ill in 2008, I had just got a new job but hadn’t started yet. After a couple of weeks of no income, I went onto incapacity benefit . This was £ 73 a week. It was so little. Out of that I had to live, pay towards my rent and support my children.

My most heart-breaking moment

I did a depressing budget where I couldn’t afford to see my kids or contribute to them at all. My son asked if I was coming for half term to see him. I had to say no. It was my most heart-breaking moment. At this point, I had been denied three times by Disability Living Allowance (DLA) and was awaiting a doctor’s visit at home.

In 2011,  I was moved over to Employment and Support Allowance (ESA). I filled in the 40-page form and got all my paperwork together. I was so worried. I was put in the work-related activity group (WRAG). This involved a trip to the job centre on my birthday. I had two people with me, wore a face mask and hoped I wouldn’t need to get out of my wheelchair and need the toilet.

Josie, a disabled woman, wears a face mask to protect against allergens
Josie wearing her face mask

In 2012 , the job centre invited me again. I was now single and having more reactions so they rang me. I was so so nervous. They put me in the support group and realised I was too unwell to study and other options like office work were a no and I couldn’t even go in a charity shop due to my allergies no matter work in one. So I was released into the utopia of the support group.

It made me anxious and worried

In 2012 , I was reassessed for DLA. My three-year award was up. Reassessment meant a full assessment as if I was applying for the benefit from scratch. I thankfully had an amazing social worker who I will be forever grateful for. Between her and the Occupational Therapist manager, I got all the assessments and paperwork together (again) and was awarded five years. This is due soon and with the move to Personal Independence Payment (PIP), I am not looking forward to it.

This year a work capability form arrived. At first, I thought it was a mistake. I rang, it wasn’t. I can’t write easily or well so I started answering the questions into my laptop. I was worried and scared and avoided dealing with it for a couple of weeks. It made me anxious and worried.

I knew I wasn’t going to be able to achieve it in the time given, so I rang. I was told to get the form back when I could, with no mention of money stopping. Two weeks after the date on the form I had it ready and was going to get it printed by my carer as I get two hours once a week for errands. Then I missed a payment and that day had a letter saying my ESA had been stopped. I rang and it was confirmed.

Josie, a young disabled woman, following a reaction where her face has swollen and become red
Josie following a reaction with swelling and redness

I asked for help, this took five phone calls. The first said no we don’t have your case anymore, ring ‘X’. I rang ‘X’ and they said ring ‘Y’, ‘Y’ said ring ‘Z’ first. Eventually, I broke down in tears, sobbing. A man rang and I answered the questions (including really personal things like how heavy my periods are, how often I need the toilet at night, if I was continent etc) and he filled in my form for me. He reinstated my money immediately. I was told a copy of the form would be sent for me to sign but it never came. But my money continues.

In the four days it took for me to get help, I had a p45 and a letter saying my housing benefit had been stopped. If I had been in hospital or unwell and not able to do the chasing, my life would have completely fallen apart and I would have lost the roof over my head.

Two days after the phone call I had an anaphylaxis. Stress makes it more likely I will have one. Anaphylaxis is not a minor allergic reaction, it’s where you swell up, your throat closes and your blood pressure and pulse drop. This happens quickly (within three to five minutes) and I have to be ready to give myself an EpiPen, otherwise, I would die. I have had to have 78 EpiPens so far and I will shock again.

What needs to happen next

My needs are documented in so many different places – if only these records could be joined up so I don’t need to repeat myself. I’m eight years in now and I feel battle weary.

We need to look at this Work Capability Assessment and find a more holistic, compassionate way forward.

Visit Josie’s blog site to learn more about Mast Cell.

If you have any questions about benefits or employment, contact Scope’s helpline where we provide free, independent and impartial information and support to disabled people and their families.

You can also start or join a discussion on our online community.

Zimmer frames are the invention of the devil! – #100days100stories

Fear of falling, social invisibility and Zimmer frames. Valerie Lang, 75, discusses the realities of being older and disabled. She shares her story as part of Scope’s 100 days, 100 stories campaign

A portrait of Valerie Lang, 75, smiling.

I was diagnosed with cerebral palsy as a baby and started to walk unaided when I was six. My walking was inelegant but functional. Unlike many of my class mates, I was spared the horror of callipers. The children who wore them were so terrified of falling over in them that few, if any, learned to walk at school.

As a child, I was fearless. When I did fall, I was small enough to not do any serious damage. I would scramble to my feet and be up again in seconds.

I loved the freedom that walking gave me. I still do.

Help when I needed it

As a young adult, I studied and worked in London. If I fell over in the street, people would always stop and help me up. I’ve fallen in the middle of busy roads, landed in a heap at the top of a tube escalator, and been thrown from the back of route master buses. On each occasion, someone was always there to ask if I was OK.

Today, as an older disabled woman, I have become totally invisible. On the street, people ignore me, walk in front of me… some nearly walk into me, but fortunately they don’t because my mobility scooter would hurt them.

I’ve been on my hands and knees on the pavement clearing up after my dog and people will just walk past. They don’t stop to think why a grey haired old woman is kneeling on the footpath. That didn’t happen 30 years ago.

The bubble society

We live in a ‘bubble society’. So many people on the streets today are on their mobile phones, or in a rush to be somewhere else. It is as if we are all hermetically sealed into our own private little plastic bubble. We don’t have the time or space to think about the people around us.

I also wonder whether people are afraid of doing the wrong thing, and perhaps getting sued. Or it could just be that health and safety has won out and that people are no longer willing to take a risk.
Whatever the reason, it leaves me even more reluctant to walk anywhere unaided.

Fear of falling

As I’ve got older, I’ve learned that confidence matters far more than physical ability. I broke my ankle some years ago, just falling sideways from my own height. That accident shattered my confidence. If I do fall now, I can’t get up by myself. Today, when I leave the house, I’m all too aware of the potential dangers.

Unfortunately confidence cannot be summoned up at will. I have stood at the side of my car, looking at the six foot gap to my garden hand rail, and muttering to myself ‘don’t be an idiot,’ but I can’t take the first step. The fear would cause me to fall.

The art of walking

My mum always believed that if I only concentrated totally on how I was walking, I could learn to walk perfectly. I never did because I am unable to give full attention on placing my feet carefully for more than a few paces. I am much more interested in what I am about to do.

I use a trolley to help me balance and get around when I’m walking. I think that zimmer frames are the invention of the devil. To shackle old people to such clumsy objects is cruel. Turning 90 degrees requires one to pick the wretched thing up and move it round a bit, at least eight times. It is enough to put anyone off trying to walk. As with wheelchairs, anyone dispensing them should be made to use one first, for at least a week.

A step backwards?

I was lucky to be young in the 60s. In spite of the equalities legislation that has come in since, I was walking – albeit unsteadily – in a narrow gap in history when the few disabled people who were out and about, found society to be less judgemental than it may have been through history, and sadly seems to be now.

Find out more about 100 days, 100 stories, and read the rest of the stories so far.

Why did Valerie campaign to change the name of The Spastics Society to Scope?

Disability Innovations: How magic is helping children with hemiplegia grab life with both 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.

Breathe Magic

Breathe Magic is a creative approach to traditional therapy which uses magic tricks to put the fun back into children’s recovery and rehabilitation. They run ‘Magic camps’ in the school holidays for children aged 7 to 19 with hemiplegia, teaching children specially selected and scalable magic tricks as part of a fun and effective intensive therapy programme. The two week programme focuses on learning to use two hands by combining magic, circus skills, costume design, fabrication and theatre production in a targeted way, to improve motor skills and hand function.

At the end of the two weeks the children have the chance to show off their new skills to family and friends in a performance at a professional theatre. After the camp the budding magicians attend a once per month Saturday club for six months to help sustain their new skills, provide an ongoing peer support network and ensure lasting impact of the progress made.

The Secret Behind the Magic

Breathe’s approach to intensive motor therapy is well-researched and has shown clear clinical benefits and improved outcomes for participants. delivers clear clinical benefits and improved outcomes for participants. The programme is also in line with the National Institute for Clinical Excellence (NICE) guidelines for the management of spasticity in children, as it follows the HABIT (Hand-Arm Bi-manual Intensive Training) model which is a task focussed intensive bi-manual therapy.

Over the 10 days (60 hours) children work together with magicians, Occupational Therapist’s and physiotherapists on a one to one basis within a group setting, to learn and practice magic tricks which develop motor and bi-manual skills. Every trick requires the children to practise precise movements that incorporate the rehabilitation exercises therapists often ask children with hemiplegia to do to improve hand and arm function. Time old tricks such as the ‘cups and balls’ trick require the young magicians to turn a cup over in their hand and to pick up the ball using the thumb and forefinger. This helps to develop essential movements such as forearm rotation, grasp and release, and co-ordination. Similarly, rope tricks involve stretching movements and movements to increase dexterity.

The real magic is that these tricks can only be mastered with plenty of repetition – practice makes perfect! The repetitive nature of practising magic tricks helps to build up the child’s strength and dexterity in their weaker hand/arm. Every child has their own ‘Magic Diary’ to record the tricks they learn each day, and the tricks they should practice at home each evening. Although children know that the camp is designed to improve hand function, the real focus is always on learning magic and having fun, rather than doing the ‘boring repetitive exercises’ that children usually associate with therapy.

What are the results?

Turning the exercises into magic tricks helps children stay motivated and engaged, meaning exercises are no longer a chore but something children look forward to doing. And the results found are pretty impressive.

The programme shows sustained benefits across functional motor and psychosocial outcomes for the young people. The programme also addresses additional associated problems such as; parent/child relationships, psychosocial difficulties and self-esteem. 
The young people are often able to do daily living activities for the first time in their lives after completing the programme, such as getting dressed independently and cutting up their own food.  This increased independence resulted in parents and carers reporting a 50% reduction in extra time needed to support their child, equating to up four hours each day! The research results from the programme have been published in peer reviewed medical journals and presented at conferences around the world.

The performance skills taught as part of the camp are designed help to increase the children’s communication skills, self-esteem and general emotional wellbeing. Children and parents also reported increased confidence and a more positive outlook, which resulted in numerous additional benefits, such as improved performance at school.

Breathe Arts Health Research

Breathe Arts Health Research was founded in 2012, and is the social enterprise behind Breathe Magic. It is run by a small team of staff, which includes clinicians, academics, artists and business professionals.  The team work together with frontline staff, patients and their families to deliver new healthcare programmes which bring the arts and science into healthcare to improve health outcomes.

Breathe Magic has now been commissioned as a clinical service by the NHS Lambeth Clinical Commisisoning Group and NHS Wandsworth Clinical Commissioning Group, they are piloting adapted versions for children with mental health problems and adult stroke patients. Other Breathe projects include bringing music and poetry into hospitals, clinical healthcare settings and community centres, as well as putting on high quality performing arts programmes in hospitals in partnership with leading cultural organisations such as the National Theatre and the Royal Academy of Music.

Why we like It

We love how Breathe AHR combines magic and fun with therapy – words you rarely see in the same sentence! It not only has clinical benefits, but giving children magic skills also hugely boosts their confidence by teaching them they can use weaker limbs for tricks which even their friends at school can’t do! The magic camps ‘can do’ and fun approach to therapy focuses not on a child’s impairment but on talent and potential, teaching children to grab life with both hands!

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.

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.

Disability Innovations: How 3D printing will make orthotics smarter, faster and cheaper

Woman wearing and holding decorated back braces

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.

What is Andiamo?

Andiamo is a start up creating healthcare solutions for disabled children, with a mission to see no child ever having to wait more than one week to receive a medical device.

Andiamo’s first venture is looking to 3D print orthotic supports, from back braces and wrist braces, to open foot orthoses. To reduce waiting periods to receive orthotics from a number of weeks to a mere 48 hours.

They are working to combine 3D scanning, printing and bio-mechanical models to create orthotics for children with a range of impairments from cerebral palsy, spina bifida or spinal injuries, to strokes and the side effects of chemotherapy.

How can 3D printing help?

Naveed and Samiya Parvez are parents from London whose son, Diamo, was born with cerebral palsy. They are also the founders of Andiamo.

Having been through the orthotics system with Diamo, so they know firsthand the discomfort and hassle involved in being measured and fitted for a new back brace. The process currently involves the child having to lie still for an hour to have a plaster of Paris cast made before waiting up to 28 weeks for the new orthotic to be made.

We all know how children can grow out of shoes and clothes in a matter of weeks, so it’s no surprise that by the time many children receive their orthosis months later they no longer fit. The current system is not only old fashioned but also painful, slow and expensive.

Naveed and Samiya founded Andiamo as they saw the huge potential in 3D printing and wanted to help make sure that no other family has to go through what they did.

Smarter, faster, cheaper

Not only is the process of 3D scanning and printing quicker and a more pleasant experience for all involved, it also sees a dramatic improvement in the accuracy of the final orthotic.

Whilst traditional plaster orthotics are accurate to 1 to 3 millimetres, 3D printed orthotics can be accurate to 0.1mm, which means they can ensure a near perfect fit.

Art and design is at the heart of Andiamo’s ethos. They are working to see the end of ugly supports, which make users feel bad about using them, by incorporating beautiful and artistic design into their orthotics. For Andiamo, their design pillars of Magic, Beauty and Invisibility are at the heart of everything they do, as Samiya Parvez sums up, “The choice between being ugly and being able to walk is not an option.”

What’s next?

Andiamo have already scanned three children and several adults for their orthotics and are developing prototypes in preparation for their first fitting.

To celebrate Andiamo getting to the IBM Interconnect and Smartcamp World Finals for start-ups in Las Vegas, they have just launched their second Crowdfunding campaign and are hoping to raise £40,000 by the end of March. Their aim is to get more families involved in their service. To find out more, or to help support their campaign, visit Andiamo’s Kickstarter page.

Why we like it

We love how this project is driven by parents of a disabled child who are working to find an innovative solution to a problem they’ve experienced first-hand. Andiamo has a real user-centered approach which is designed around the child and their family, focusing on reducing distress and increasing the quality of life of disabled children.

3D printing orthotics has the potential to not only reduce pain and increase comfort, but also to improve the speed and accuracy, as well as the cost and design of orthotics. Andiamo really seem to have thought of everything and are definitely one to watch!

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.