“He was so keen to help, he ended up breaking the wheelchair ramp at 2am…”

Guest post by Martyn Sibley, blogger, campaigner and co-founder of Disability Horizons magazine. Martyn has spinal muscular atrophy and uses a motorised wheelchair. He spends much of his time travelling the globe and is currently spending three months in Spain.

I find awkwardness comes in a few different forms. Some people are very wary around disabled people, and often people don’t engage with you at all because they’re afraid they might do or saMartyn next to the seay the wrong thing.

In social settings, however – especially where there’s a bit of alcohol involved – people tend to become over-helpful, and you get a lot of unwanted attention. One (rather drunk) guy was so keen to help me onto the bus at the end of a night that he ended up breaking the wheelchair ramp at 2am. Everyone on the bus had to get off and wait half an hour for the next bus, which was very awkward for everyone, and me especially.

Or people will accidentally be patronising, saying things like ‘It’s great to see you out…’ I’ve had a few nights out where someone has tried to take me under their wing as a kind of Good Samaritan, even though I don’t need help and am clearly enjoying myself with friends.

Process barriers

Some of the awkwardness comes from what you might call ‘process barriers’. If I can’t get onto a bus or train because the ramp isn’t working, or there aren’t enough staff to operate it, that’s not the fault of my impairment – it’s the fault of the process that’s been put in place.

I travel a lot, and normally when I’m taking a plane, I’ll get on before the other passengers. However, often the airline doesn’t pull its finger out, and I’ll end up being carried onto the plane andMartyn on a train wheeled down the aisle with everyone watching. Because I can’t hold my head up without support, I look different from when I’m settled in my chair, and it gives completely the wrong impression of me. It’s embarrassing for me – and what’s more, it reinforces the impression that disabled people are ‘different’ in some way. And that means people will keep feeling awkward.

Ending the awkward

I’ve been on a bit of a journey over the course of my life in how I feel about awkwardness. When I was younger, I hated any kind of special attention – now, I’ve realised that sometimes it can lead to genuinely interesting conversations, and new connections.

Disabled people have a part to play too in ending the awkward. It’s about accepting that sometimes some people feel awkward, and being confident enough in your own skin to defuse their embarrassment. I try never to take offence where offence isn’t intended, and humour is a great coMartyn looking out to seaping strategy.

And I’ve found that just being out there and living life to the full is the best way of educating people about disability. Going out, getting drunk, having fun, pulling doughnuts on the dance floor in my wheelchair – it’s a good way of breaking down those barriers without even trying.

Find out more about Martyn on his website.

Making the UK’s 999 system more accessible

Guest blog from Chris Channon, founder of Pegasus. On Monday Chris received an award from the Home Office for his work on Pegasus.

I have cerebral palsy and have lived independently in the community for over 30 years. During this time I’ve needed to call 999 on several occasions, often to report anti-social behaviour, but my calls were not always dealt with properly because I’m speech-impaired. I either couldn’t say what I needed to say or I was mistaken for a nuisance caller.

When I asked what was available to assist me to make these calls, the only options were to use TypeTalk or Textphone services. Neither of these were of any use because of my dexterity problems. So I came up with my own solution to the problem – Pegasus.

The Pegasus database

People who, like me, find it difficult to give this information using spoken word in a time of crisis can register their details on the Pegasus database. This can include names, addresses and other information which could be useful in an emergency.

They are then issued with a Personal Identification Number (PIN). To use the system, a person has to say Pegasus (or something that sounds similar) and their PIN. The emergency call operator will then immediately have access to the individual’s information and can quickly get on with dealing with the situation. The Pegasus PIN can also be shown or told to a police officer or other emergency service personnel when help is needed person to person. Pegasus is available for use in this way by those who are unable to use a phone.

The information on the database is not used for any other purpose other than assisting the individual.

Pegasus in Nottinghamshire

I started working with Nottinghamshire Police in 2005 on Pegasus and the scheme went live in April 2008. We now have over 500 people registered in Nottinghamshire and the control room receives about 15 calls a month from people using Pegasus reporting crimes and incidents.

Users include people with learning and physical disabilities, deaf people – who use it via the textphone service, those with mental health issues and elderly people.

We conducted a survey of users and 80% reported that Pegasus improved their confidence in calling 999. They also shared their thoughts on the system:

“I was impressed with how quickly somebody arrived, I found it easy to contact and report my incident.”

“Since being a member of Pegasus I now feel someone is at my hand when I need help. I am in my late eighties, almost housebound; Pegasus is always there – thank you.”

Plans for the future

Pegasus is now in use by:

There are two other police forces looking at the possibility of adopting Pegasus in their areas.

If you wish to register with Pegasus that’s currently operating in your area, please contact – or get someone to do so on your behalf – your local police force.

If Pegasus is NOT running in your area, ask – or get someone to ask on your behalf – your local police force what they intend to do to make their 999 call system more accessible.

It has been without doubt the most difficult thing I’ve done in my life and it’s only now after almost 10 years of work that people are beginning to see its value.

Watch a report on ITV News about Pegasus.

A new approach to tackling the extra costs faced by disabled people

Life costs more if you are disabled. From buying specialist equipment to facing higher everyday expenses, disabled people face extra costs in almost all areas of life.

Last week the Public Accounts Committee reported that the new Personal Independence Payment (PIP), introduced from April 2013 to replace Disability Living Allowance (DLA), is facing major problems. As a result many disabled people are experiencing unacceptable delays in receiving these crucial extra costs payments.

From having to buy assistive technology, spending more on heating, buying more expensive transport, to paying more for insurance – as a disabled person you will face around £550 in disability related expenditure. PIP is intended to help cover the extra costs that disabled people face.

Delays in access to the fundamental support provided by government to offset these costs puts disabled people more at risk of financial difficulty. This is especially worrying since disabled people are three times more likely than non disabled people to turn to doorstep loans.

Later today I am speaking at an IPPR North event – ‘Cost of Living Crisis: are disabled people being forgotten?’ – where I will be highlighting the importance of both protecting extra costs payments and tackling the root causes of the extra costs that disabled people face.

Protecting extra costs payments

In the Priced Out report Scope calls for crucial extra costs payments to be protected by a triple lock guarantee, and from the overall cap on social security spending. We set out principles for an improved PIP assessment that ensures that disabled people who need support get it when it is needed.

When we talk about living standards in the UK we often think of growth, wages and prices. The most recent Labour Market Statistics showed that the cost-of-living crisis may be easing – average prices did not exceed average wages for the first time since 2010. But this will not be the case for disabled people who face lower incomes, higher costs and diminishing or severely delayed support. The issue of extra costs is one that predates the recession for disabled people, and without the right support to offset these costs, a recovering economy will not improve disabled people’s living standards.

But as well as making sure the support is there, where extra costs can be driven down, they should be. Some things can be very expensive for disabled people, and we want to find out why.

Commission on Extra Costs

Huge progress has been made in opening up opportunities for disabled people over recent years. Advances in technology have brought big improvements in independence and participation but all too often these come at a high, sometimes prohibitively high, cost. The inaccessibility of infrastructure and gaps in public service provision can also cause considerable extra costs for disabled people.

Political parties and the commercial sector have begun to recognise disabled people’s collective spending power but Scope, BT and the RCA’s Helen Hamlyn Centre for Inclusive Design found that there are still gaps in the market between mainstream and disability-specific technology which – if tapped – have real potential to drive down disabled people’s costs and raise living standards.

This year, Scope, supported by the Barrow Cadbury Trust, will be launching a major Commission into the Extra Costs faced by disabled people. Over the course of a year, an independent panel of experts will consider the ways in which the extra costs faced by disabled people and families with disabled children in England and Wales can be driven down by both business and government.

We will be asking disabled people for their experiences of extra costs, and looking for organisations and individuals to submit formal evidence to the Commission. We also want to work with experts and practitioners across all sectors to find innovative solutions that drive down extra costs.

If you would like to get involved in the Commission or want to know more about it, please get in touch with us by emailing commission@scope.org.uk

End the Awkward: the story so far

End the Awkward was our first major awareness campaign in many years. We wanted to challenge the awkwardness that two-thirds of people say they feel around disabled people.

All End the Awkward films

It’s been a huge success so far.

Why is this campaign important?

We’ve done research into public attitudes over the last year and found the public tends not to engage with disability issues, and disabled people, because of fear of saying or doing the wrong thing.

Younger people are twice as likely to struggle with this. That’s why we chose to focus on people aged 25-30 who aren’t disabled. Instead of shaming them for ‘doing the wrong thing’, we wanted to say, just relax. If you try to see the person, not just their impairment, you can’t go far wrong.

We realised many people wanted advice that would make them feel more comfortable when talking to a disabled person. Disabled People’s Organisations helped us prepare tips on ending the awkward, covering everyday situations from sport to sex.

Time to launch. What was the response?

In the run-up we tested the campaign with lots of young people and disabled people, but it was still a nail-biting moment as we launched the campaign. How would End the Awkward go down? Would disabled people think it hit the right note? Would people who aren’t disabled find it helpful? Would anyone even care?!

Then End the Awkward launched, and we knew we’d hit on something good, something that resonated with people.

Great comments came tumbling in on Twitter, Facebook and email. Scope’s phones rang off the hook – well, quite a bit.

Here’s a small slice of what people said.

See more End the Awkward tweets

The campaign even went worldwide. We heard from people as far away as Nova Scotia, Singapore and Australia, and saw it tweeted in at least seven languages.

Here are some of the emails we received.

“I think your End the Awkward videos are simply brilliant. It made me laugh and well up at the same time, and just rang very true.”

— Jenny

“I applaud your current TV campaign to help non-disabled people overcome embarrassment and interact with people with disabilities.”

— Jan

“Good choice of people and subjects, making the points very well. As disability is such a touchy subject for so many people, very pleased that Scope are grasping the nettle proactively.”

— Rob

“About time a direct approach was taken to inform people about disability. I was that awkward person until my early 20s!”

— Tony

“What a good idea this is. I think the majority of the time people really want to say or do the right thing but don’t always know what that is so end up avoiding the situation and thereby exclude the person with a disability.”

— Harriet

“I absolutely love your #EndTheAwkward campaign! It’s just what’s needed at the moment!”

— Chloe

Every major news source in the UK, as well as many in other countries, discussed the campaign. Highlights include:

But End the Awkward has not been without controversy. Opposing views included:

It was great to kickstart conversations and it was really good to get the feedback, even where there was a difference of opinion. Several people wrote in with suggested additions or tweaks to our tips content, some of which led to us making improvements.

End the Awkward in numbers

We wanted to spread the word far and wide, to help change attitudes for the better. The signs are it’s working: over 1.5 million people have seen the campaign so far.

  • End the Awkward films have been watched more than 1.3 million times
  • Over 160,000 people have read our tips for ending the awkward
  • More than 65,000 people have taken the quiz to find out how awkward they are
  • Close to 100 stories have appeared in the media, including national, regional and international television, radio, websites and newspapers.

Just the beginning

At times it’s easy to think that our vision of changing society is too big a challenge. Is it really realistic? But what End the Awkward has shown us is that attitudes towards disabled people can change, using a fun, and positive approach.

Thank you to everyone who took the time to take part in the campaign and spread the message. This is just the beginning. Add your name in support of End the Awkward and be the first to hear what happens next.

The Better Care Fund shouldn’t be seen as causing an NHS Funding Crisis – It’s helping to solve it

Newspaper headlines in the last two weeks have carried a number of stories about a funding crisis heading for the NHS. Common amongst these stories is the fact that they identify the transfer of NHS funding into social care as contributing to this ‘black hole’.

What is being referred to here is the creation of the ‘Integration Transformation Fund’ at the Spending Review in July 2013. Since then, it has gained the less technical title – the ‘Better Care Fund’ – in recognition of the Fund’s increased political importance.

Despite the change in title, the principle remains the same: this fund – totaling £3.8bn – is to be made available to Health and Well-being Boards to be spent on better social care for disabled and older people.

It is true that half of this money, £2bn, has been earmarked from the NHS Budget in a bold step that the Government has taken towards the hallowed ground of integrated health and social care services. It was a recognition of the obvious – that social care and hospital care are closely tied together, and we must start to think of them as such. An older or disabled person trapped in a hospital bed because they can’t get the support they need at home is perhaps the simplest illustration of how closely the systems are tied. Indeed, most patients just don’t know there is a difference in the first place.

As such, this £2bn doesn’t have to work hard for its place in the Fund. It’s important to remember that the Fund itself it not a straightforward ‘direct transfer’ from health budgets to social care. Health and Wellbeing Boards have to bid for this money – and there are tight national conditions attached. The most important of these conditions is that the money must be spent in a way that works for both social care and the NHS.

Another condition is that the money must be spent on care support that prevents unnecessary hospital admissions at the weekend.

In other words, by its very design, the Fund has to save the NHS money for it to even be allocated in the first place.

In both the NHS and in local authorities providing social care, there is considerable pressure to deliver more with fewer resources. With the core budgets of local authorities being cut by up to 40%, the social care landscape has had to adapt radically and quickly.

The Better Care Fund offers an incentive to both the NHS and to social care services to work together to innovate. It helps to lay the foundations for a much more integrated system of health and care.

And it must – by its very design – save the NHS money, not send it into financial ruin. If it’s not doing that yet, councils and health teams need to work harder together, not walk away. The government’s right – what’s at stake is better care.

No limits, and no excuses – World’s Strongest Disabled Man Competitor

Gary Clarke, who has cerebral palsy and is a support worker for people with learning difficulties, is competing in the World’s Strongest Disabled Man Competition.

In 2011 I was euphoric to hear from a friend on Facebook that there was a World’s Strongest Disabled Man competition. Having been a fan of strongman since the days of Geoff Capes and Jón Páll Sigmarsson. I can still hear cries of “I am a Viking” to this day.

I remember saying to my grandmother at the time “one day I’ll be doing this”.

I heard there was a local strongman training camp and trained there for a few years until it closed in 2014. Under the watchful eye of Phil Diamond, I entered various strongman competitions. My first demonstration was in 2011 where I took part in the Chase Charity Competition in Guildford, where I pulled a six ton truck, hand over hand, and lifted a car axle for repetitions.

I took part in another charity truck pull event along Paighton sea front, this event was truly spectacular. There were two choices of which truck to pull – a five ton tracker unit (the cab of a truck)or an 18 ton truck, I pulled the tracker unit twice with ease, the guy running the event said “I think that’s enough for you today.” To which I replied “you’re having a laugh mate I have come all this way I want to have a go at the 18 ton.”

I pulled the truck from start to finish, at the end of the pull the organizer said to me he’d never seen anything like that before in 20 years of Strongman. Bearing in mind I had never before attempted a truck pull of this sort I didn’t think it was a bad effort, also I was the only person to finish, and the only person there with a physical impairment. The crowd went wild and the atmosphere was electric, people were even stopping me in the street afterwards and congratulating me on the achievement.

I then flew out to Iceland to compete for the first time in the Worlds Strongest Disabled Man competition. The event consists of six events over two days:

  • The truck pull – stationed at the top of a hill in a harnessed down wheelchair I had to pull a 4×4 up the hill, this was by far the toughest event of the competition.
  • The log lift – 75kg on an incline bench for repetitions
  • The Hercules hold – 80kg each hand on a pulley system, holding on for time , this felt like true torture !
  • The loading race
  • The crucifix hold – 10kg swords in each hand for maximum time
  • The atlas stones ranging from 30-90kg in weight!

I was reasonably satisfied with my debut performance, considering I had not had much chance to practice specifically for the events at the time. I also got the opportunity to meet Magnus ver Magnusson the four time winner of the World’s Strongest Man competition, co-organizer of the event and Strongman icon. This experience was quite surreal as Magnus was somebody I had admired for years and suddenly I was being collected from the airport by him, brilliant!

2014 is my fourth time competing in the World’s Strongest Disabled Man competition

The build up this year has been unique because I have had the privilege to be coached by Laurence Shailai who has won Britain’s Strongest Man twice and competed in the World’s Strongest Man competitions. Laurence pushes me hard and gives me good solid advice on all the events and aspects and training, thanks Loz!

I am fortunate to be sponsored for the Iceland event by Impey Showers. Big thanks to them for their ongoing support.

I have high ambitions to start up a Britain’s Strongest Disabled Man competition next year.

I am living my dream, living proof that regardless of any impairment or disability you may have you can achieve anything you put your mind to. Who would have thought I would be able to pull an 18 ton truck 25 meters?

Watch this space for updates on how I do in Iceland, I will continue to push the boundaries on what I can achieve.

Reasons I’m against legalising assisted suicide

A new Assisted Dying Bill is due to be considered by the House of Lords.

It’s prompted lots of debate – including Baroness Tanni Grey-Thompson and Lord Falconer on Radio 4’s Any Questions.

Scope’s Chair, Dr Alice Maynard, explains why she is against a change in law.

1. A change in the law sends a message to disabled people that their lives are not worth living.

Why is it that when people who are not disabled want to commit suicide, we try to talk them out of it, but when a disabled person wants to commit suicide, we focus on how we can make that possible?

I think it stems from a deep-seated belief that the lives of sick and disabled people are not worth as much as other people’s.

You only have to read the news to see that disabled people are still viewed by some as a burden on society and the economy – even by those in elected office.

People may well look at me, as someone with Spinal Muscular Atrophy, and think that my life must be dreadful. But I love my life and I’ve achieved a lot.

My concern is what happens when people have the chance to act on these views. I don’t want disabled people, or others such as older people, to become vulnerable to pressure from their families, health professionals, or from society, to end their lives to stop “being a burden”. The current law gives us protection. We shouldn’t change it on the basis of a few understandably heart-breaking cases.

2. It not just about ‘terminal illness’ – it’s about disability

Of course it is about disability. Why is the person at the end of the Dignity in Dying campaign video disabled? Why did Lord Falconer poll disabled people to ask them what they thought if it’s not about them?

This Bill is all about looking at disabled people and saying ‘I’d rather be dead than be like you’. Disabled people hear this all the time – including me.

Lord Falconer even conceded three years ago that assisted suicide should not be offered to disabled people ‘at this point in time’.

Even now, who decides what is terminal? The line between a disabled person whose life-expectancy is shortened and someone with a terminal illness can often be blurred. Prognoses change, people’s circumstances change, and it is notoriously difficult to predict how long someone has to live.

3. International experience shows disabled people who are not terminally ill are using the legislation to end their lives.

Lord Falconer’s Bill is based on the one they use in Oregon, USA. There, 40% of those requesting to end their life do so because they feel a burden on friends and family.

I’ve met people who have experienced very serious accidents, and who begged to be allowed to die because their lives were changed beyond all recognition. Now they are really glad to be here. I worry that a change in the law would lead to people making the biggest decision they can make, when they aren’t in the right frame of mind.

Mental capacity can be affected by all kinds of things, including depression – which often accompanies serious physical illness- and the effect of medication. How can we make sure that the right safeguards are in place to stop people making a decision, when they don’t really have the right information and experience to understand the possibilities?

The key part of the Bill makes no reference to mental health. It would allow disabled people who have mental health problems or who are depressed to end their lives.

Doctors are against it; disability charities are against it; older people charities are against it; palliative care experts are against it. The experts say this is a bad idea.

4. Disabled people want help to live, not to die

I’ve had discussions with disabled people who want assisted suicide to be legalised, because they worry that they won’t get the support that they need when they get older. That shouldn’t be a deciding factor in ending your life.

Disabled people have experienced massive cuts to their support in recent years, leading to many feeling isolated, and unable to even get up and out of the house.

Rather than helping people to end their life, we should be making sure that the system supports disabled people to live their lives to the full, so they have a future worth living for.

Learning Disability Week 2014: Gaby’s story

It’s Learning Disability Week 2014Alison has blogged for us about her 21-year-old daughter Gaby, who has been supported by Scope. Gaby has now left home and lives and works independently.

Our daughter Gaby has always known what she wanted – to finish college, get a job, and one day live in her own home.Gaby looking at camera

She has always wanted to be part of the community, and she has the right to have an ordinary life just like anybody else.

Gaby has a personal budget because of her learning difficulties. So a couple of years ago, my husband George and I knocked on the door of a supported living service run by Scope, in our hometown in Worcestershire.

At the time, Gaby was in her final year at college. She was desperate to get out into the world and start life as an adult, but she needed support to build up her confidence and social skills.

The right support

We were introduced to Lottie, who runs Scope’s community support services in our area. She spent lots of time talking to Gaby about what she liked and disliked, and what she wanted out of life.

Then she matched Gaby up with Alice, a young support worker, and together they would do all the things Gaby wanted to do – shopping, meals out, going to the gym and out for walks.Gaby and Alice walking down the street

The first time Gaby went into town shopping with Alice, somebody at work said to me, ‘Oh, I saw your Gaby in Bewdley with her mates on Saturday’. It was so nice – they just looked like two young people enjoying themselves.

The support we had from Scope gave Gaby the opportunity to be away from me and dad, so we don’t do the talking for her. Her confidence grew and grew.

Getting a job

Gaby has always wanted to work in catering, so we contacted a factory near our home to see if they could offer her a placement in their canteen.

However, the management were worried that the job would be too technical for Gaby, and it almost didn’t happen.

But then Scope matched us with another two support workers, Louise and Pam, to support Gaby at work. It was crucial in getting the company to agree to tGaby working in a kitchenhe placement.

We always knew that
Gaby could do it – and before we knew it, the canteen manager told us she was confident enough to go it alone. Now she goes to work unsupported, and she loves it.

Moving out of home

When a place came up in a supported house last November, with two girls Gaby already knew, it just seemed like perfect timing.

We’d alGaby in her roomways thought of it as a longer-term plan but Gaby had come so far in such a short time, and she knew she was ready.

It was a bit scary at first, of course, but Gaby is so happy with how things have turned out. She has her own life, and we know she always has access to a support worker when she needs a hand.

Now, to know that Gaby’s happy and settled – it’s such a relief, I can’t put into words. But we wouldn’t have got there without that support from Scope to prepare the way.

Find out more about Learning Disability Week 2014 and Scope’s community support services.

Why we are proposing to close or change 11 of our care homes

Post from Alice Maynard, Chair of Scope

Scope is coming under criticism for its proposals to close or change 11 care homes over the next few years.

As Chair, I’d like to try to explain why we’ve put these plans forward.

Scope runs many services for disabled people and their families – including almost 40 care homes.

Most of our care homes were opened in the 1960s or 70s.

At that time it was standard practice to bring lots of disabled people together, usually with only their impairments in common, to live in large institutions, out of the community, where organisations provided them with the support to do basic things.

Times have changed.

And many disabled people’s aspirations have changed. But they’re having to drag society along with them.

More and more disabled people, particularly younger disabled people, are opting to live in the community, with support from staff they choose, using their own personal budgets.

Councils are responding by opening different kinds of services.

As a result we’re finding there’s less and less demand for places at large residential care homes.

Care homes like this are therefore very likely to close in the long term.

And that leaves organisations like Scope with a tough choice.

Do we sit and watch while these homes gather more and more vacancies until they become unviable and we’re left with no choice but to close them in a hurry?

Or do we make the decision now, so that we can close these homes in the best possible way?

We’re proposing to make the changes in a number of slow phases, which include formal consultations, over the next few years.

We know many residents have lived in the homes a long time, and we understand that the proposals have caused a lot of anxiety. We’re proposing to do this in a number of slow phases, which include formal consultations, over the next few years.

We want to give residents and families time to ask questions and for them to understand the proposals.

We have been talking to residents and families since October last year – and we will continue to do so.

This includes investing in independent advocacy for every resident, to make sure each individual understands what these proposals mean for them and can have a say about what they want for the future.

People ask me if we’re pushing independent living for all the residents.

But I don’t believe in one-size-fits all support.

Every individual in our care homes has different needs and different wishes.

It’s really early days. We can’t predict where and with whom they will want to live if the homes do close.

But we guarantee we will support people to work with the councils who fund their care and support to move on to their new homes.

If you have any questions about these proposals, please contact feedback@scope.org.uk.

Living with a rare chromosome disorder

The first Rare Chromosome Disorder Awareness Week has launched this week (2-8 June) to help combat the isolation and alienation many families experience living with a rare diagnosis. 

Marion and Robert
Marion Mitchell a family support officer for the rare chromosome disorder charity Unique, with her son Robert

Robert is 20 and has a rare chromosome disorder called idic 15. He has learning difficulties, epilepsy, scoliosis and he is non-verbal. His mum, Marion Mitchell is a family support officer for the rare chromosome disorder charity Unique, which offers support to over 10,500 families in 95 countries.

“Robert was diagnosed when he was a year old,” says Marion. “I joined Unique in the early days and I continue to be amazed at how the group has grown in numbers. “

An estimated 30 per cent of all children diagnosed with significant developmental delay in the UK have a rare chromosome disorder, according to Unique. Rare Chromosome disorders affect at least 1 in every 200 people, making the incidence higher than Down’s Syndrome and Cerebral Palsy combined.  Yet rare chromosome disorders remain relatively unknown.

Rapidly improving genetic testing techniques means that children, who would previously have been labelled with developmental delay, autism or other learning disabilities now have a formal diagnosis. However, as Marion explains: “So little is known or understood about rare chromosome disorders that many families come to Unique distressed, struggling to come to terms with their child’s diagnosis, often feeling isolated and confused.”

Which is why Unique has launched the first Rare Chromosome Disorder Awareness Week 2–8 June to help increase understanding of the challenges of living with a rare disorder. This week Unique families will be telling their communities, doctors, teachers and MPs all about the difficulties they face. They will also be encouraging professionals and parents to get a diagnosis as early as possible, so support is available early on.

Sophie Sainty, Chair of Trustees at Unique, and herself a mother of 12 year old Max who has a rare chromosome disorder, says: “The shock of having a child diagnosed with any disability or disease is devastating. But having a child diagnosed with a rare chromosome disorder, often with no name to it, makes it even more difficult.

Doctors don’t know how the children will be affected; families, neighbours and the public don’t understand it. We are left feeling very, very isolated. We hope Rare Chromosome Disorder Awareness Week will help to spread the word and reach new families who need support.”

To find out more about living with a rare chromosome disorder take a look at the video below. Or to get involved in the first Rare Chromosome Awareness Week visit Unique’s website.