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 – iBeacons help blind people conquer the Tube

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 it?

We all love to talk about how stressful travel in London is – particularity on the underground. Our usual complaints (the sights, the smells, the tourists standing on the left) pale into insignificance when compared with the challenge of navigating the system with a visual impairment.

Wayfindr is an app that aims to help blind and visually impaired people to use the London Underground (LU) more easily and independently, by giving the user accurate audible directions as they make their way through the station. A trial has just been undertaken at Pimlico station, and the hope is that if successful it will be rolled out across the LU and other transport networks.

“When I tested the app at Pimlico last week for the first time it was awesome, it made me feel free.” Courtney, Royal London Society for Blind People (RLSB) Youth Forum member.

Who did it?

The project was born out of the Royal London Society for Blind People (RLSB) Youth Forum, which in March 2014 highlighted travel as a key issue. They collaborated with ustwo (a studio which builds digital products and services) to develop the Wayfindr app. After an initial trial RLSB and ustwo approached LU to see how they could use this technology.

How does it work?

Bluetooth ‘iBeacons’ transmit signals that are picked up by the Wayfindr app, which uses them combined with ustwo’s positioning technology to work out where the user is. From this information the user is given audible directions which guide them around the ticket hall, down stairs and escalators, and onto the platform.  Directions are received though bone-conduction headphones, which are unique as they allow users to continue to hear what’s going on around them.

Young visually impaired Londoners involved with the charity were involved in testing the Wayfindr app. Feedback was positive, with those who were initially insecure reporting feeling more confident at the end of the trial sessions. There were some constructive points that will be addressed in future trials, and more iBeacons would need to be put in place before it can be used more widely.

Check out RSLBs Wayfindr page and video for more information about the trial and how the technology works.

What’s the dream?

The results of the trial will inform how this technology could work on the underground, to help fulfil the ambition of standardising all this technology and make it seamless across the transport network. Ustwo are also aiming to try out Wayfindr with multiple modes of transport, using various technologies to complement beacons for more accurate navigation.

If it is rolled out, it would offer a simple way for thousands of people to navigate public transport, making a dramatic difference to visually impaired people’s lives.

Why we like it

This ground breaking trial has been driven directly by a group of young people and the real issues they face, and has been achieved through close collaboration between charity and private company. We love how this technology is being developed on an open basis, to allow other developers to take the technology forward and build apps that work with the beacons. We hope the results of the trial mean that this is adopted across the London Underground and that other transport providers are encouraged to invest in this area.

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.

I’ve been tipped out of my chair and punched in the face – #100days100stories

Guest post from Simon Green, as part of our 100 days, 100 stories campaign

My name is Simon Green, I live in Bridgend, South Wales. I have a condition called Neurofibromatosis, which along with a freak accident has resulted in me having to use a wheelchair for the past 12 years.

I am Chair of Bridgend Coalition of Disabled People, a Trustee with Disability Wales and Coordinator with the Disability Hate Crime Network.

My life changed straight away, I expected it to, but I did not expect that having to use a wheelchair would result in hostility, but sadly it did. I was verbally abused, called derogatory names and deliberately tipped out my chair, and on one occasion punched in the face. The guy who hit me used the excuse that “he didn’t think it was right for a f***ing spaz to be out with a pretty girl”.

Campaigning for changeMan in wheelchair smiling

I have spent the past few years campaigning for more awareness in relation to disability related harassment and have heard some horrific stories of both verbal and physical abuse against disabled people.

But over the last three or four years I’ve been hearing more and more about a very different type of abuse, and that’s language like ‘scrounger’ and ‘benefit cheat’, especially against people with more hidden disabilities.

And this is where I come on to politics! Now I would not for a second directly blame any politician or journalist for someone attacking a disabled person but I believe politicians and journalists need to be careful with the language they use.

The power of words

Man in wheelchair at a rally
Campaigning for change: Simon Green

The constant talk of cutting welfare, suggestions that the state of the economy is down to the number of people claiming benefits and phrases such as “Strivers verses Skivers” do not help – and can increase hostility towards the disabled community.

I get extremely angry when such comments are made as they do a huge amount of harm.

Disabled people have votes, and if party leaders want these votes they need to cut down on the inappropriate and demonising comments.

Find out more about the Disability Hate Crime Network.

For advice and support call the Scope helpline on 0808 800 3333.

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

The five stories that got you talking – #100days100stories

Ninety days ago, we began counting down to the General Election 2015 by publishing a story everyday from a disabled person or a family with a disabled child. We want the public and politicians to get to know disabled people, so they understand them better.

The stories have covered a vast range of topics, we’ve had stories about accessibility, employment, exercise, extra costs, fashionindependent living, parenting, prejudice, siblings, sleep, social care, sports, technology, writing and much more!

As we near the end, we’ve looked for the five stories that have had the biggest reaction online so far:

5. We want the boys to experience things together, as brothers should

Martin and his three young sons

Martin is a life-long Manchester United Fan and wanted to take all three of his son’s along to enjoy the football. One of his son’s uses a wheelchair. When Martin contacted Manchester United about their seating arrangements he couldn’t believe their response.

Many of you commented expressing your shock that such a wealthy club would treat disabled people in this way – some people even contacted Manchester United with their thoughts. The story was also picked up by the Daily Mail’s Manchester United team page.

4. Working mother of a disabled child

Hannah with her daughter

Hannah is a writer, speaker, campaigner and mother of two; one with autism and complex learning disabilities. She wrote a story highlighting some of the shocking comments made by local authorities to mums of disabled children who work.

We shared the story for International Women’s Day and our Facebook posts was soon inundated with stories of similar attitudes. Many of you spoke about financial pressures forcing you to return to work and the guilt that many are made to feel.

3. A driver wouldn’t let me on the bus

Jean sitting in a home office

Jean has Ehlers-Danlos syndrome, a painful condition which means she is prone to muscle tears and dislocated joints. She uses a wheelchair most of the time. Jean is an active campaigner for disability rights. In 2013 a bus driver refused to deploy the ramp to let her on a bus.

We frequently receive messages from people who have had bad experiences on public transport, so it was fantastic to be able to share Jean’s story where making a complaint led to an unexpectedly positive outcome.

2. We were offered a termination 


Alexandra was 38 weeks into an uneventful pregnancy when she was informed that her baby’s brain had not developed properly and was offered a termination.

Many parents commented on our Facebook page about their own children. The story was also picked up by Mommies of Miracles in America.

1. Life with an invisible impairment

Carol, wearing glasses, smiling

Carol has an invisible impairment, and shared a comment made by a senior manager at work.

The story had a huge response across social media with many people sharing their experiences of rude remarks and stares because their impairment wasn’t obvious. Ehlers-Danlos Support UK shared the message on their Facebook page.

Read all of the stories published so far and look out for the final nine stories. 

Suddenly, I’m treated as if I’ve had 30 or 40 IQ points knocked off – #100days100stories

Guest post by Cath, from Driffield, East Yorkshire. She’s sharing her story as part of our 100 days, 100 stories campaign. Woman smiling

Three years ago, I developed a motor neurone disorder. There’s no definite diagnosis, except that it will keep getting worse and that there is no treatment – a pretty grim prognosis.

In practical terms, it means that in three years I’ve gone from being able to do cartwheels and handsprings to needing a wheelchair to get more than a few paces.

I’m really independent – militantly independent, in fact – and while there are more and more things that I have to get help doing, I’m fighting it off for as long as possible.

Loss of control

For example, I really don’t like being pushed in my wheelchair. The only time I’ve ever allowed it was when we went off-roading, and I got my husband Phil to hang on to the wheelchair so I didn’t fall into a ditch!

But when I get on a train using the wheelchair ramp, I find that often the person assisting you starts pushing you up the ramp without asking. In other situations, I’ve even been moved out of the way without being asked.

It’s very strange – obviously people are trying to help, but it’s very dehumanising. It’s a bit like asking someone for directions, and them putting their hands on your shoulders and pushing you the right way, rather than telling you. It’s the loss of control that I find quite terrifying.

Assumptions people make

It’s automatically assumed that you’re not capable of doing things.The number of times I’ve spoken to someone in the street and mentioned work, and they’ve said, ‘You work?’

It’s even worse now that my condition has started to affect my speech. All of a sudden I get treated as if I’ve had 30 or 40 IQ points knocked off – and by people who never treated me like that before, which upsets me.Woman in wheelchair outside in a park

Unfortunately I’ve spent a lot of time off work and recently had to stop. This is mostly because my employer wasn’t prepared to make reasonable adjustments for me.

I’m not able to talk about it at the moment as I’m going through an employment tribunal, but it has been hugely stressful, and wasted a lot of my time during a period when I was in a much better physical state than I am now.

Changing attitudes

The attitude of too many people is that disability issues are all about benefits and illness.Yes, many of us do need benefits – often because of all the extra expense involved in being disabled – but that doesn’t mean we are all just sitting at home doing nothing.

Disability isn’t necessarily the same as infirmity. You can be disabled without being ill, and if you put all the right adjustments in place, a disabled person can be just as able to work and take part in society as a non-disabled person. DSC_0076

As a disabled person working with children, I hope I help them see that we’re all different – disabled or not, we all have different things to bring to life.

And it should be noted that we have as many faults as everyone else too. We’re not little suffering saints, as many people expect us to be. We can be just as arsey as everyone else!

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

I can’t walk across a room but I can play 18 holes of golf – #100days100stories

Being diagnosed with multiple sclerosis was a harsh blow to Graeme. Here he tells his story about how golf has improved his health and helped give his life purpose again as part of our 100 days, 100 stories campaign.

Graeme Robertson smilingI used to be a keen sportsman and passionate golfer, however at 35 I was diagnosed with primary progressive MS – that’s more of a slow decline rather than the highs and lows commonly associated with MS. It was a harsh blow and for 15 years I ditched competitive sports. My work became an issue as my mobility declined and I felt very low about everything. It was particularly hard in the winter when I found it impossible to even get to the swimming pool independently.

I was provided with a wheelchair, and as a very proud man, that was even harder to deal with. Our local council introduced my wife Sue and I to table tennis (with me in the chair) so we could have some of the fun we were missing out on and it was really the turning point.

After watching a YouTube video I wondered if I could find a way to play golf again, and so four years ago I took part in the first pilot for disabled golf and as they say the rest is history. Along with my wife Sue, I co-founded the Disabled Golf Association (DGA) as a not-for-profit charitable community interest company. We now have over 800 members across the country!

Sue and Graeme in a golf cart

The power of sport

It’s amazing the power of the human mind to overcome adversity. Sport can be vital in therapy and rehabilitation of disabled people,  including those with hidden disabilities. Golf compared to other sports, played with a stationary ball, can stimulate neural pathways. There are very few sports available for disabled people played out in the fresh air that can be both frustrating and fun at the same time!

15 years after my diagnosis, I have gone on to be Team England Captain for the last 3 years. Through golf I’ve found a purpose to life again. My golf is not as good as it used to be, but I’m really enjoying the challenge and though I can’t walk across a room, I can play 18 holes (albeit with a little help with a golf buggy and a kindly arm!).Team England - 13 golfers on a golf course

I know from personal experience the difference my participation has made on my health. My wife has noticed that my concentration and balance have improved, but more importantly I’m more content! Being involved has given me the opportunity to meet some very inspiring people and make new friends. Sue’s health suffered over time too, so it’s fantastic to see her learning to play golf too now!

Future ambitions

Now I’m working hard to improve my golf swing! I’m not only working out at the gym but going to yoga, back swimming again, hydrotherapy, and I attend a gym for people with long term conditions where I can safely do cardio work on the bikes. As event co-ordinator for the DGA I hope to provide inspiration to others too. I’ve also found suitable employment where I have turned my disability to a real advantage.

DGA provide a supportive, caring and understand environment for making true friendships. Find out more on the Disabled Golf Association website.

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

Our Creative Future: Thoughts from FutureFest 2015

We attended this year’s FutureFest along with another CharityWorks trainee, Poppy Dillon, Communications Assistant at NSPCC. She kindly agreed to write a guest blog for us, to share her thoughts on the event as someone who doesn’t work directly in innovation.

What is FutureFest?

FutureFest is an event run by the innovation charity Nesta, and is a weekend of radical ideas, talks and immersive experiences aimed to inspire, excite and challenge perceptions of the future. The annual festival took place this March in London and covered seven different strands of the future. These were future democracy, future global, future machines, future money, future music and future thrills.

For those of us who didn’t attend, what was it like?

FutureFest was a circus for the senses, filled with bright lights, whirring technology, claustrophobic corridors and interactive installations. Neurosis was the first thing you saw as you entered FutureFest. It was like every glitzy backstage party that I’d ever imagined as a teenager: walking through a heavy black curtain into windowless cavern in a mist of dry ice, and then this huge machine before you. Balls of lights sticking out of it in all directions. A chair at the top for you to sit in, and immediately be swept away in a kind of neurological adventure.

Neurosis was just the first of a whole collection of scintillating machines and experiences. These included a blind robot, a kissing machine you can attach to your phone and an orchestra which combined sound, taste, touch and smell in an effort to imitate synesthesia. I took part in one of their performances, and it really was as bizarre as you’d imagine.

Chocolates dangling from a frame
Furturistic sweet shop at FutureFest

There was even a futuristic sweet shop with a wealth of exciting new sweets, with textures and ingredients that are potentially soon to become popular (apparently insects and vegetables will be involved). Willy Wonka would have been right at home.

What was the best bit?

What really made FutureFest for me were the speakers. From Baroness Helena Kennedy’s impassioned talk on the future of democracy on an international playing field, to Matthew Herbert’s vision of Country X, the first virtual country, and of course the unforgettable live link up with Edward Snowden in Moscow. All the speakers came from different angles and walks of life but what brought them together was their shared belief that the future could be bright.

So we will really all be replaced by robots in the future?

Nesta has developed a quiz which works out the probability of your job being automated in the future (thankfully my job seems pretty safe, and unlikely to be taken over by robots!) According to Nesta, the good news is that creative jobs are hard to automate, and they say the UK’s creative economy could be its secret weapon, generating a million extra jobs by 2030.

Ije Nwokorie, CEO of brand consultancy company Wolff Olins, was charged with answering the weighty question of the future of creativity in an age of automation. He began his talk with the old folk legend of John Henry, who beat a steam powered hammer in a race to drill a tunnel. After this remarkable feat, John Henry died of the stress and exhaustion; proving that the extraordinary capability of humans is still no match for a machine.

The whole premise of his talk was how, rather than living in fear of some kind of hostile, alienating robotic future, which should rather focus on one of the key aspects that differentiated us from machines: our creativity. And far from sounding like cute PR chat- he was a creative consultant after all- this man’s words had a truth to them. He painted an aspirational image of the future, where in his words, the man who came to check your meter would also be the guy who could advise you on how to sell your spare energy, and the shop assistant at Marks & Spencer’s would also be your style consultant. In this world the number one skill sought after by employers would be your own unique creativity.

What could this mean for charities like Scope?

Ije’s idea of a world in which people’s working time isn’t filled by swathes of torturous admin is a compelling one for all of us working in business environments; especially so in charities, where leaner business mechanisms could lead to more money and time to spend directly serving customers.  Understandably, he was challenged in his vision by an audience member, who asked whether this wouldn’t increase unemployment by reducing the number of staff needed to run an effective business, and leaving people who just weren’t creative thinkers to live on the dole. Something that was on my mind.

However, Ije’s response was simple. Creativity breeds creativity. The more you are challenged in your thinking the more creative and adaptable your ideas will become. And the greater the range and diversity of creative thinking, the more agile and responsive a business can become. Without the day-to-day admin and bureaucratic processes that we know, we can only speculate about how job descriptions would look, how organizations would be structured and how many people would be needed to staff them. Would it spell a re-evaluation of top-down hierarchical models of business? After all, a creative solution could come from anyone.

As for the idea that some people just aren’t creative, Ije’s response was, well, we’ll teach them! With an education system that equips everyone with the tools to harness their own creative strengths, rather than just catering for students who can succeed academically, he believes that this would be possible.

Automation has been redefining the way we work for centuries, but rather than shrinking the job market it creates the space for new work. Just think about the unused creative potential in businesses which is caught up with self-perpetuating admin. And hell, what about the chance to take pride and enjoyment from your work? That alone is worth it.

What was your overall impression – and does the future look bright?

Although the technological display was fascinating, little of it was explained satisfactorily, so it left us hapless onlookers nodding, saying “oh hey, that’s cool”- drifting from invention to invention, wondering why we’d never really paid attention in our physics lessons at school, or whether it would have helped if we had. This gimmicky feeling pervaded the whole event, and jarred perceptibly for me with Nesta’s more serious aims as a funder of public services and digital social innovation. More futuristic than future.

Poppy Dillon

A person using a virtual reality headset
Oculus rift virtual city at FutureFest

Some final thoughts from Scope’s Innovation department.

It’s easy to come away from an event like this questioning how accurate or plausible all these images of the future are and how much of it we could really believe. Will chocolate covered vegetables catch on, and if so, why? What was wrong with the classic chocolate orange?

That aside, FutureFest was a thought provoking event, all about opening up discussions about the future directions it could go in, and directions we might not want to go in! The main message was not just to look at the future as something that only happens to us, but something we can affect and shape more in line with the things we care about. We all have a role in this, charities in particular, and this was a really empowering message. What the future holds, who knows. Guess there’s only one way to find out!

I use a communication aid to help me speak – #100days100stories

Maria is 10, and has cerebral palsy. She uses an eye-gaze communication aid and attends a mainstream school. She’s shared her story as part of our 100 days, 100 stories campaign

Hi! My name is Maria and I am 10 years old. I live with my mum, dad, sister Sophie and brother Harry in North London. I have three cats called Elsa, Tara and Stevie.

Maria with her cat on her lap, sitting next to her mumI have cerebral palsy. I was very ill as a baby and I had to stay in hospital for a few weeks. The illness damaged bits of my brain that control how my body moves. I find it very difficult to move my arms and legs how I want to. This means I can’t walk or use my hands or talk with my mouth.

I use a communication aid called a Mobi 2 to help me speak. It has picture and word symbols on it which speak when I look at them long enough. This is called eye gazing and I have managed to speed up a lot this year. I like using my Mobi 2 because it’s fun! I would like people to know more about my communication aid. I use it to do my homework and play games, I can also watch DVD’s on it, my favourite is Mr Bean!

I work with a speech and language therapist called Judy. She has taught me how to use my Mobi 2. We have worked together for five years, I even named my hamster after her! When I first got my aid I had 16 symbols on each page, I now have 144!

Maria and her mum looking at their iPad togetherUsing my communication aid is hard work and can make me feel very tired so sometimes I just eye point to the things I want. I have carers who look after me at home, Judy has shown them all how to use the Mobi 2 so they can support me. Every Monday I use my aid to tell my carers how to cook my favourite meals. The recipes are all on there. I love macaroni cheese, pizza and chocolate cheesecake! I want to put some of my grandma’s Cypriot recipes on there too. Sometimes the word I need is not on the aid and I have to ask someone to programme it in, or I have to spell it. My spelling isn’t the best but it is getting better. I enjoy spelling but it takes longer.

I go to a mainstream primary school. I am in year six. I am moving to a mainstream high school in September. I’m excited about the move. I love the new uniform, it’s all green! Some of my friends are going too. The school is really big so I will need to practice my wheelchair driving skills to be able to get around it.

Maria laughing with her mumI can email and text my friends using the aid. I also text Judy every week to tell her what kind of cake I want her to make and bring to our sessions! Chocolate is best. I sometimes text my mum when I’m supposed to be working at school. Don’t tell anyone!

I have a friend who also uses a Mobi 2 to speak. We meet up for play dates and talk to each other using our aids. We both love One Direction! I really like being able to speak to other children using communication aids because I am the only one at my school. I would love a pen pal so I could email them about my life and they could reply. Maybe Scope can help me find one?!

Do you know any children using a communication aid who would like to chat with Maria? Or would your child like to share their story with us? Let us know in the comments below.

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

I was fighting to stay in work – #100days100stories

Jacqueline picGuest post by Jacqueline, who turned to her entrepreneurial skills after being forced to leave her job due to a fluctuating condition. But she’s still fighting for the support she needs to fulfil her work ambitions. She shares her story as part of our 100 days, 100 stories campaign.

I have always been interested in reducing inequalities. It surfaces at times when I see something that just isn’t right and suddenly I find myself challenging what is happening and developing ways to improve it.

This impulse led me to my first experience of being an entrepreneur. Actually it was the second – my first was selling old toys at the end of the path when I was little.

I had seen how disabled children were being denied equal access to play and childcare. So I developed and managed an inclusive play and childcare scheme for Bolton. It was built on the principle of the social model of disability so that disabled children had the same access to play and childcare as other children.

A dream role

This all led to what was a dream role for me – working as access and inclusion manager for Bolton Council. It involved rolling the model I’d developed out across the borough and eventually around the country. It involved speaking at conferences, sitting on national advisory boards and developing national policy guidelines.

I was at the height of my career and enjoying every moment of bringing significant and long-term change to this area. But my world came tumbling down when I started to experience some frightening changes in my health, which was later diagnosed as Fibromyalgia.

Fibromyalgia is a fluctuating condition that affects around one in 20 people in the UK. There’s no cure and it affects everyone differently.

My mobility is affected which means it takes me a while to get going in the mornings. I find my mind is ready but my body isn’t. It’s as if someone has pulled my plug out – my energy levels just drop and I have to stop what I am doing.  I experience chronic pain and fatigue, IBS and disturbed sleep. I didn’t realise at first that not managing the symptoms results in cognitive dysfunction – the harder I pushed back against them, the worse it became.

Fighting to stay in work

I was also fighting to stay in work. My employers were refusing to meet the recommendations made through Access to Work, a scheme that provides funding for workplace adaptations, specialist equipment and transport. After an 18 month battle that ended in a tribunal, the process was taking its toll on my health and I felt there was no option but to resign.

I suddenly found myself moving from a secure job and a good salary to incapacity benefit.

During this time I set up a local support group for people who were in similar circumstances. I also tried to get back into mainstream employment. But the interviews were a disaster. It seemed understood that you might need reasonable adjustments once you had the job, but not in the process itself.

Like me, other members of the support group were having problems staying in work and finding other positions when they lost their jobs. I turned my efforts to developing a workforce retention programme to support our members to stay in work. I had quite a lot of success particularly with Sainsbury’s and the NHS.

Access to Work for entrepreneurs

I decided the only way forward for me was to become self-employed. I found gaining support through Access to Work involved substantially more assessments and questioning about my condition. The scheme didn’t seem to understand entrepreneurship, or chronic and fluctuating conditions.

However, I was eventually awarded the support I needed and was able to enjoy a successful working life once more. I developed an inclusive entrepreneur programme aimed at introducing people who face barriers to mainstream employment, to the possibilities of starting their own businesses. I also launched a social enterprise called the Inclusive Entrepreneur Foundation.

Unfortunately my health deteriorated due to complications following a routine operation. After further battling, I was able to get the support I needed to continue working through Access to Work. But the recent restructure of the scheme has now led to the total loss of my award.

The fight continues

I’ve appealed the decision and have been an active campaigner in highlighting the impact changes to the scheme are having on disabled people. If I’m not successful in the appeal, I will be forced to close my business and return to what I believe is now termed Employment and Support Allowance.

For too many disabled people there are barriers to entering, staying in, and progressing in work. Scope’s new report out today shows the economic impact of enabling one million more disabled people to enter work by 2030. 

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

Four things we’ve learned about hospital stays – #100days100stories

Guest post by Anna from Oxford. Anna works for Scope coordinating our Face 2 Face befriending service in Oxfordshire. She has a disabled daughter, Scarlett. Anna is sharing her story as part of our 100 days, 100 stories campaign.


I’m not sure how many times we have been in hospital over the years.

My eight-year-old daughter Scarlett has a genetic condition which means she can’t produce hormones the body needs to deal with stress, illness or injury. This means a sickness bug is life-threatening for her. She also has autism and sensory issues, which means she doesn’t always realise when she’s unwell, or let us know about it.

Scarlett is going into hospital again for surgery in two weeks’ time, and it’s led me to reflect on some of the things we’ve learned about hospital stays…

Every child has unique challenges

Scarlett’s sensory issues mean she sometimes has extreme reactions to things that might seem harmless. For example, she has always hated having anaesthetic gel (‘magic cream’, in children’s hospital-speak) put on her arm before she has a blood test or an IV tube put in.

When she was a baby I thought it was because she was anticipating the pain, but now I know it’s because the feel of it makes her sick. She actually vomits looking at some creams just at the thought of it on her skin.

Scarlett and her two-year-old sister both looking through cameras, standing at the top of a hill
Scarlett with her little sister, Heidi

Explaining this at hospital can be hard – she has been told many times “Don’t worry, it doesn’t hurt”, but to Scarlett, it really does!

It’s hard work for us, too

I am up almost 24 hours a day when Scarlett is in hospital. During the night I’m often up every hour to comfort her, or help get her to cooperate. It’s difficult to even leave the ward for a cup of tea.

A lot of care is expected to come from us rather than the hospital staff. The nurses do an amazing job, but they are often very stretched, and I can’t imagine what would happen if every parent handed over all their care duties to them.

It is also really expensive! My husband Andrew, Scarlett’s stepdad, often has to take time off work, and there are things like parking and food to pay for. Parents and carers lose their DLA if the person they care for is in hospital for more than a week, and I think this is shocking.

Explaining things can be difficult

It can be hard to explain to Scarlett what’s happening, and particularly why she has to endure so much that her younger sister Heidi doesn’t.

I’m always on the look-out for children’s books about going to hospital that don’t involve ‘getting better’ at the end. I have seen lots about having tonsils out, or a broken leg, but Scarlett’s condition will never go away, which can be hard to explain.

Scarlett and Heidi on a toy tractor

I find the best approach is to be fairly honest and say that the medications, procedures, operations and masses of appointments are there so to give her the best chance of staying well.

…But it gets easier

Taking Scarlett to hospital, and seeing her looking awful, has become less of a big deal over the years, but it is always a reminder of how fragile she is.

Scarlett lying back on a sofa, stroking a cat
Scarlett with Dolly, one of our cats

When she was born, I remember being scared about taking her home because there was so much to remember. I was so anxious that I even bought a breathing monitor after a scary incident when I couldn’t wake Scarlett up.

Even now, I find myself looking at the doctors’ faces to see if they seem worried, and starting to panic – what if this is the time things don’t turn out okay?

But generally it has been far easier than I thought it would be in those early days. You adapt as a family, and Scarlett is very happy, lively and brave in dealing with the things life has thrown at her.

We’re into the final weeks of our 100 days, 100 stories campaign. Read the rest of the stories so far.