Nystagmus is an eye movement disorder where the eyes wobble uncontrollably, leading to significant visual impairment. If nystagmus develops early in life, the brain often adapts to the eye movements but for those who develop the condition after infancy, the effects are debilitating. To them the world is in constant motion as their eyes move erratically, this symptom is called oscillopsia. Individuals who have a stroke, multiple sclerosis or brain injury may develop nystagmus and oscillopsia.

It is difficult for those without nystagmus to appreciate the condition; a comment often made by those who suffer with nystagmus. A collaboration between Medical Physics and the Academic Unit of Ophthalmology and Orthoptics at the University of Sheffield sought to help others understand nystagmus and the difficulties of living with it. A 6-month project funded by Sheffield Hospitals Charity produced a virtual reality smartphone app which simulated the effects of having acquired nystagmus.

Main Menu Screenshot

The app uses real eye tracking data from nystagmus patients, obtained with state of the art equipment, to deliver an authentic experience of the condition. The app can be viewed on most modern smartphones but to achieve a first-hand experience requires a virtual reality headset, in which the smartphone can be inserted. Virtual reality immerses the user in a virtual 3D world which can be explored using natural head movements. The nystagmus eye movements are imposed onto each eye to provide the wearer of the headset with a realistic, evocative experience and hence a greater appreciation of the condition.

App Screenshot Reading Scene

The app has been positively received from a wide range of people.

Healthy individuals exposed to the condition for the first time stated: “I couldn’t live like that!”

A parent of a daughter with nystagmus when attending a showcase event declared: “Wow! We came along today to use the headset as my 4-year-old daughter has Nystagmus. It was amazing to be able to see how people with Nystagmus see. I have to say that I felt quite ill using it. People with Nystagmus are truly amazing! I feel very fortunate that we got the opportunity to use this and to speak to the people involved. Truly amazing. Thank you.”

A nystagmus sufferer commented: “Fantastic, should be available for all to see”

The app aims to raise awareness and help individuals with nystagmus to communicate their condition. We hope it is useful to occupational therapists working with these individuals and enables them to better understand the impact of the disorder.

The app is available as a free download for both Android and iPhone. Please search the relevant app store for ‘Nystagmus Oscillopsia Sim VR’. If you would like any further information please contact David Randall, drandall1@Sheffield.ac.uk.

Launched at Westminster, it aims to spread the word about the condition all over the UK because so few people have heard of it, including many health and social care professionals.

The film has been backed by CMT expert and President of the Association of British Neurologists, Professor Mary Reilly* and charity CMT UK, which supports people with CMT, a condition with a wide variety of symptoms including uncontrollable pain, chronic fatigue, unstable ankles, balance problems and falls.

It is estimated that around 23,000 people in the UK have CMT, but the vast majority may not be aware they have it and instead will be dealing with the condition, in the dark, on their own.

The one minute film – the idea for which came from Douglas Sager (67) who found out he had CMT in 2011 – features people of various ages and at different stages of the condition including Harvey Rogers (10) who has minor nerve damage, his mother Lisa Rogers who has difficulty walking and Emma Lines who is now in a wheelchair and struggles to open a can of pop due to poor co-ordination in her hands.  It is interspersed with X-ray style animation so that each person is shown as a digital body of nerves, revealing what can happen when they malfunction.

Commenting on the film, Douglas said: 

“I was dancing two or three times a week so was shocked to get diagnosed much later life; while this took a few months of referrals, I see this as quite fortunate as it can take some people years to find out they have CMT.

“I decided to retire and follow my passion for film making in order to spread awareness of this condition, so people who have it can get diagnosed earlier and receive the support they need.  Charities like CMT can offer advice on how to manage the condition as well as support with benefits, jobs and family issues.  It is important people know what they have so they can seek both medical and emotional support.”

While CMT is currently incurable, early, accurate diagnosis can improve the lives of those with the condition as it can be managed more effectively and proper genetic counselling can be received so the risks to the next generation can be learned.

Charcot-Marie-Tooth is named after the three scientists who discovered it.  Steadily progressive, it causes muscle weakness in the lower legs and hands, leading to problems like hammer toes, restricted mobility, uncontrollable pain and carrying out tasks needing fine motor skills, such as fastening shoe laces.  However, people with CMT have a reasonable quality of life with normal life expectancy.

CMT UK’s chief operating officer, Karen Butcher said:

“Douglas fundraised for this film off his own back and we are delighted with the end result, which is compelling, human and informative.  There is so much to tell people about CMT but this captures the bones of it well.

“If people know they have the condition, we can support them by answering the many questions they will have, put them in touch with other people and families with CMT and tell them where they can get practical support and advice.  We would also encourage them to visit their GP and receive medical attention.”

The CMT awareness campaign is being backed by medical professionals including leading neurological expert Professor Mary Reilly*.

Professor Reilly explains:

“CMT has many different characteristics, but commonly there is a loss of muscle and touch sensation, predominantly in the feet and legs, but also in the hands and arms in the advanced stages of disease.  These lead to a range of orthopaedic complications, leading to a variety of mobility and dexterity problems, and sometimes scoliosis.

“CMT does not describe a single disorder, but a group of conditions. It is important to determine exactly what kind of CMT someone has, in order to improve their quality of life and this can only be done once a diagnosis is considered in a patient.  Anecdotal evidence from CMT UK tells us this takes much longer than we would like and many people put up with CMT for a long time thinking they are clumsy or have funny feet, suffering in silence when they could be receiving help and support.”

The film was written, produced and directed by award winning film maker and director, Tim Partridge and also has the backing of Shadow Foreign Minister, Catherine West MP.

Catherine said: 

“I first met Douglas when he came to my constituency surgery and told me about Charcot-Marie-Tooth disease, its problems and lack of awareness about it. It was wonderful to launch the film in Parliament and I hope that it will lead to greater awareness of the cause and symptoms not only in the UK but throughout the world”.

To donate visit: www.justgiving.com/CMT.

To find out more visit www.cmt.org.uk or contact 0800 6526316.

Deafblind Awareness Week runs from the 24 June – 3 July 2016 and aims to raise awareness of the issues facing people who are deafblind. 

Theme this year is ‘older people’, with over 250,000 people aged over 70 living with sight and hearing loss. Events this year, include a deafblind art exhibition in London, a mass participation ‘sensory walk’ in Exeter and a special fundraising concert in Caerphilly. An art exhibition, mass participation walk and music concert are among the activities being coordinated by the deafblind charity, Sense, for Deafblind Awareness Week this year.

Deafblind Awareness Week, which runs from the 24 June – 3 July 2016, aims to raise awareness of the disability, and is timed to coincide with the birthday of prominent 19th century deafblind activist Helen Keller (27 June).

Throughout the week, the charity’s volunteers, shops, communities and services will be running events and activities. Highlights this year include:

Quayside, Exeter – Mass Sensory Walk – Friday 24 June – 10:30am

There will be opportunities for visitors to explore some of the challenges people living with deafblindness encounter, learn some simple signing and attempt reading Braille. At 11:45 there will be a 4km sensory walk. The event is inspired by Roger Mulholland, a local deafblind man who has sadly since passed away.

Park Regis Hotel, Birmingham – Photography Exhibition – starts Friday 24 June

A photographic showcase of Sense’s work in sport, as it has attempted over the last 18 months to make physical activity more accessible to people with disabilities. The photography has been taken as part of the Deafblind Active project, funded by Sport England.

Caerphilly Workmen’s Hall, Wales – Live Music Event – Friday 1 July

Fundraising festivities kick off with karaoke and a disco from 3.30pm until 6.30pm, with special guest Cardiff Captain Jack Sparrow. From 7.30pm, Caerphilly Workmen’s Hall will then host a special fundraising concert, with live music from three local bands and a special performance by the Caerphilly Ladies Choir.

St Luke’s Community Centre, London – Art Exhibition – Friday 1 July -1pm

A special event will be hosted at St Luke’s in London to mark the end of a community art project involving older people with sight and hearing loss in Islington. During the project, which took place over 10 weeks, the group drew creative inspiration from visits to the British Library and the Charles Dicken’s Museum and with artist Alex McEwan they have created their very own unique and collaborative sensory work of book-art.

Richard Kramer, Deputy CEO of Sense said:

“We’re really excited about the number of events taking place in Deafblind Awareness Week, from a photography exhibition at the Park Regis Hotel in Birmingham, to a group sensory walk in Exeter. We hope that the public take an interest in their local activity and come down and get involved. It’s a great opportunity to learn more about deafblindness, and of course have fun too!”

Deafblind people have a combination of sight and hearing loss and it is estimated there are 356,000 deafblind people in the UK.

The theme this year is ‘older people’, as an estimated 222,000 people in the UK aged over 70 living with sight and hearing loss, Sense has created a booklet to help to understand what an older person living with sight and hearing loss is going through, how to help and where to go for more support.

Download it here: www.sense.org.uk/content/enjoy-life.

Left to right: Fraser Cash, Rachel Holland, Kriszti Turner, Norah Szentirmai, George Clark, Lucy Clark, Joel Sweeney

As part of the events in Conductive Education (CE) Awareness Week (12 – 19 March) Rainbow House, Mawdesley and Stick ‘n’ Step, based in Wallesey on the Wirral will be taking part in a job swap with a difference.

Two conductive education specialists from each organisation visited the the other organisation on Tuesday 15 March to share best practice and learn from each other.

Whilst at the centres, the conductors will host a tea party for the children and staff to celebrate the occasion. Stick ‘n’ Step will be taking cake and sage tea, which is used as a muscle calming treatment, whilst Rainbow House could not go to the Wirral without taking some Chorley cakes as part of the treats for the children in Wallasey.

CE Awareness Week aims to increase understanding of conductive education, and its benefits to children and adults with neurological conditions that affect muscle control, ability and learning, due to previous trauma or illness.

The aim of the job switch is for the two centres to understand how they differ when delivering CE and will allow the conductors to share best practice, learn new approaches and discuss what the children and young adults are responding to best. The two conductors will take part in the sessions, so they can see exactly how the other centre delivers its lessons.

Left to right: Rachel Holland, Brooke Emmington, Joanne Ashcroft

Julia McDonald and Lucy Bretherton from Rainbow House will be visiting the Wallasey centre and said “We are looking forward to seeing how our colleagues at Stick ‘n’ Step conduct their sessions. Every CE centre develops their programmes to meet the needs of each individual. It will be fantastic to share ideas and learn new things and to meet colleagues from another centre.

The celebration of CE Awareness Week continued on Wednesday 16 March, when the children at Rainbow House and other CE centres across the UK will be taking part in a dance to Jake Bugg – Lightning Bolt.

Rainbow House conductive education offers rehabilitation, education and fun for children, young people and adults with neurological conditions such a cerebral palsy, brain injury, stroke, MS and genetic conditions. Like Stick ‘n’ Step, Rainbow House receives no statutory funding and relies completely on fundraising to cover its annual running cost of £500k.

The Sesame Workshop says she is being introduced as part of a campaign to take the stigma away from the disorder.

They also hope Julia will help those who are dealing with autism.

The workshop says she’ll be portrayed as a girl who “does things a little differently” when playing with her Muppet friends, including Elmo and Abby.

“If you’re five years old, and see another kid not making eye contact with you, you may think that child doesn’t want to play with you. But that’s not the case,” Sherrie Westin told People Magazine.

“We want to create greater awareness and empathy.”

Julia won’t feature in the Sesame Street television show but she will be included in digital and printed storybooks.

“Families with autistic children tend to gravitate toward digital content, which is why we created Julia digitally,” said Ms Westin.

“We want parents and children to understand that autism isn’t an uncomfortable topic.”

Sesame Street is also producing online tools as part of its See Amazing in All Children initiative, to help people affected by autism manage everyday activities.

Their guides, aimed at families with children aged between two and five, include ones on brushing your teeth, visiting a restaurant and crossing the road.

Although aimed at people in the US, the resources are also available to audiences in the UK.

There are around 700,000 people in the UK diagnosed with autism, according to The National Autistic Society.

Mark Lever, the charity’s chief executive, said in a statement to Newsbeat that his organisation hopes it will “inspire” other creators to include characters with autism in their work.

“What we like most about their approach is how it celebrates difference and shows how a little understanding can change everything,” he said.

“For instance, one scene in the Sesame Street storybook shows Julia flapping

“Rather than giving her an unhelpful and judgemental look – as can often happen in reality – Elmo simply explains that this means that Julia is excited.”

Full story on BBC website.

World CP Day is a global initiative which aims to raise awareness around the world about people living with cerebral palsy. The project is led by a group of non-profit cerebral palsy charities, and supported by organisations in over 30 countries.

More than 17 million people around the world have cerebral palsy including 1 in 400 children. 10 per cent of children with cerebral palsy develop the condition due to a brain injury sustained during birth.

Now Irwin Mitchell and Brainwave have launched a new online portal which features real life stories of families affected by Cerebral Palsy in order to raise awareness of the condition and the effect it has on people’s lives. These include Natalie, who through her hard work and determination achieved a Master’s degree, Nathan who works as a disability campaigner and spoke to the UN about children’s rights in England and also Isabelle who learnt to speak after learning Makaton sign language.

Brainwave is a charity which was set up 1982 to help children with disabilities to achieve greater independence. They work with families and schools and aim to improve children’s mobility, communication skills and learning potential through educational and physical therapies.

Auriana Griffiths, a Partner and specialist medical negligence lawyer at Irwin Mitchell, said: “We are delighted to be teaming up with Brainwave this year to help support and raise awareness about Cerebral Palsy.

“Cerebral palsy does not mean that children and their families cannot live happy and fulfilling lives. But key to this is access to the specialist support that enables children to reach their full potential.

“Through our work we help families whose loved ones have been diagnosed with cerebral palsy and help them gain access to the specialist support and rehabilitation they need. Many of our clients suffered brain damage as a result of medical negligence during their birth and need a high level of care for the rest of their lives.”

Phil Edge, Chief Executive at Brainwave, said: “We are so pleased to be joining forces with Irwin Mitchell on World CP Day.

“Brainwave helps children living with disabilities to achieve greater independence.  We are helping children affected by cerebral palsy to improve mobility, communication skills and learning potential through a range of educational and physical therapies.

“Through a commitment to early assessment, best clinical practice and continued innovation Brainwave is demonstrating how far children living with complex needs, such as those with Cerebral Palsy, can progress and fulfil their potential.”

For more information about Cerebral Palsy and to read to inspirational stories please visit http://www.irwinmitchell.com/living-with-cerebral-palsy.html.

(Getty Creative)

Paul Scates and his fiancé Rob Flux talk about bipolar disorder, the couple appear in the new Time to Change advert encouraging the nation to talk about mental health.

Paul is a creative events director, mental health campaigner, peer specialist and media presenter. Paul has a strong passion to influence systematic change to current mental health services and to inspire those experiencing mental health problems.

As a person who lives with bipolar disorder, yet is fortunate enough to live a fulfilling and enlightened life, I know only too well how pivotal the role of my friends, partners and family is in supporting my health. As many of you reading will know, for every success there has to be a multitude of mechanisms which enable the machine to work.

One of the main components of my wellbeing is my partner; an undeniable source of trust, respect and love which is unbiased from academia or clinical practice. It’s a relationship which I hope many of you share; with a partner, a mother, a father, a sibling, a friend a guidance which helps deliver us from crisis.

One of the many examples of my partner’s support has come in the guise of reasoning, which has prevented several severe episodes of hyper-mania. Those episodes could have been potentially disastrous due to my euphoric state and inability to understand the consequences of my actions.

Those consequences could and have led to injury or disturbance, reckless spending, associating with unsavoury characters or, worse still, led to a period of horrendous clinical depression. Without my partner by my side I would have been vulnerable to my environment yet feeling like I could conquer the world. One such incident involved me risking my life for the pursuit of excitement and had my partner not intervened it could have been very serious.

Fortunately, I’ve now had the ability to be able to talk openly about my condition and in my opinion everybody should be able to do that. From a recent survey by Time to Change, 75 per cent of people with a mental health problem say they have lost friendships as a result of their illness. This sadly shows that many people without experience of mental health problems still feel awkward talking about the subject. If someone is suffering from mental illness, seeing or speaking to friends can be really beneficial for a lot of people.

With one in four people going through a mental health problem in any given year, it’s more than likely that you already know someone with a mental health problem. Starting a conversation could make a big difference to their lives. Although you might feel awkward and not fully understand mental health problems, don’t let that stop you from just asking ‘how they are’.  Those three words could really help.

Rob is an NHS rehabilitation practitioner and nutritionist. He attends the regional monthly Bipolar UK meetings with his partner Paul in an effort to better understand Paul’s condition which in turn helps him to better support Paul.

I met my fiancée Paul 18 months ago and as a partner of someone with a mental health condition, I took it upon myself to try and learn as much about their condition as possible so as to better understand how it affects them and what processes exist to aid in their recovery.

I only discovered Paul had bipolar disorder by accident before he openly admitted it to me when I found his medication. At first, I worried about what to do or what to say and then I soon realised that I didn’t have to do anything, apart from mainly be there and listen.

Being in a relationship, I like to make sure Paul knows that I am there for him whenever he needs me but at the same time, not to make him feel as if I am watching his every move. I like Paul to feel safe in the knowledge that I am here and I am ready to provide support, whether requested or not, when the situation requires it.

There have been a few incidents where I have been Paul’s ‘anchor’ in times of hyper-mania to prevent him from going into a euphoric state where he was oblivious to the consequences of his actions. In equal measure, I have also had to provide an uplifting sense of positivity when Paul has entered a low period of feeling worthless and unloved.

Talking about mental health is one of the most powerful tools you can ever employ because the more you know about it, the better you can deal with it. My philosophy: It’s only an issue if you let it become one. What I have learnt is that you don’t have to be an expert to start a conversation about mental health.  Being supportive can include small gestures like sending a quick text or email or an invitation to meet up.

As more and more people in the public eye open up about mental health, it’s something we will be able to normalise like any other illness. Talking about mental health can strengthen friendships, aid recovery, break down stereotypes and take the taboo out of something that affects us all. Why not start a conversation with someone you know experiencing a mental health problem? It could be one of the most important conversations you have.

By Paul Scates & Rob Flux at The Independent

(Getty Creative)