Disabled Living May Newsletter 2019

Disabled Living Newsletter

as been healthcare the 1950’s. en Awards.

May 2019

SO WHAT DOES SAM SMITH HAVE TO SAY? It might have something to do with a spoon!

KIDZ TO ADULTZ SOUTH SHOWGUIDE NOW AVAILABLE THE HYDRANT Get your free drinking system

SNOWDON MASTERS SCHOLARSHIP Apply now for funding

HIDDEN DISABILITIES Book launch

Charity number: 224742

Did You Know You Can Advertise Here!

Advertising Opportunities with Disabled Living

Get in touch with us

Our Disabled Living e-newsletter is distributed to over 93,000 contacts and is continually expanding.

All of the newsletters and bulletins highlight aspects of all our services and link to the website.

For more information please contact our team on 0161 214 5959 or via email: info@disabledliving.co.uk

Explore Our Key Features

Kidz to Adultz South Showguide now available..............................................................................5 The Hydrant....................................................................................................................................5 Help DMUK Tackle Disabled Parking Abuse at Supermarkets.......................................................8 Access Audit Training at the Foreign Office..................................................................................10 Snowdon Masters Scholarship.....................................................................................................13 Hidden Disabilities book launch....................................................................................................16 What does Sam Smith have to say?.............................................................................................19 Charles Bonnet Syndrome and Esme's Umbrella.........................................................................22 Different ways to view our newsletter...........................................................................................25

What is the CEA Card?

The CEA card is a national scheme set up by the UK Cinema Association and is accepted by 90% of cinemas in the UK. The card provides one free ticket for an accompanying person.

When a cardholder pays for their ticket, their accompanying carer will go free into the cinema to assist them.

To be eligible for a card, applicants need to be in receipt of one of the following: Registered severely sight impaired or sight impaired (formerly registered blind or partially sighted) Disability Living Allowance Personal Independence Payment AFIP Attendance Allowance More information, including how to apply, may be found at www.ceacard.co.uk

Kidz to Adultz South Showguide Now Available

The Kidz to Adultz South Showguide is now available and includes information on: 140+ exhibitors Free CPD seminars Important event information Dates for your diary ...and much more!

Click on the button below to read online.

Click here

The Hydration Foundation The Hydration Foundation was established to raise funds to be able to deliver the multiple award winning Hydrant hands free drinking systems free of charge to vulnerable people in community. See www.hydrateforhealth.co.uk for more information.

As such we would like to offer Hydrants free of charge to those who need them, and to the professionals who support them. All we need to know is where to send them to so if people are interested they should simply send us an email with a delivery address to request@thehydrationfoundation.org Vist www.thehydrationfoundation.org for more information.

5

Welcome to Our Supplier Directory The following suppliers have recently joined our directory...

Kidz to Adultz Middle Winner of Prize Worth ÂŁ900

Congratulations to Caroline on winning our prize draw at Kidz to Adultz Middle 2019. Details of the prize package is below: A table of four at a Saracens match at the Ricoh Arena Premier Hospitality Lounge A three Course, Choice Menu Champagne reception on Arrival Complimentary Selected Wines, Beers and Soft Drinks until the Final Whistle Pre-Match Commentary from a Wasp first team player A Complimentary official match day programme Complimentary Tea & Coffee Direct access to the corporate balcony On-site match day parking Hotel accommodation – 1 night (twin or double room with breakfast) Well what a fabulous time we had at the game, Jordan really enjoyed himself, as did Mum and Dad. The food and service in the Premier Club was excellent, the atmosphere buzzing (get it!), the hotel fab and comfy and great choice for brekkie, plus Jordan got to meet The Sting! Thanks to you all for organising this truly unique experience, one for our memory box.

More Prizes to Be Won at Kidz to Adultz South!

Date: Thursday 16th May 2019 Time: 9.30am until 4.30pm Venue: Farnborough International Exhibition & Conference Centre For more information visit www.kidzexhibitions.co.uk/kidz-south

7

Baywatch 2019 – Help DMUK Tackle Disabled Parking Abuse at Supermarkets A common problem for many disabled motorists is not being able to park close to their desired destination, especially at their local supermarket. The major complaint is that the disabled bays are all occupied with cars not displaying a Blue Badge.

Disabled Motoring UK’s Baywatch campaign seeks to address this.

This campaign measures the level of disabled parking abuse at supermarkets, by asking disabled motorists to survey their local supermarket car park. Specifically, they count how many disabled bays are provided and how many cars that are parked in them without displaying a Blue Badge. The other information we ask for is details of the type of enforcement (if any) carried out by the parking operator responsible for the car park. Details of the operator and enforcement actions should be displayed on the signage near the disabled bays.

When the survey closes the results are calculated, published and shared with the supermarkets to encourage them to work with the charity to improve their parking policies with regard to tackling disabled bay abuse by using effective enforcement.

The Baywatch campaign also aims to change public attitudes by bringing to the attention of disabled bay abusers the impact that their actions can have.

Lack of enforcement can lead to tragic consequences, such as in December 2013 when Brian Holmes died after being punched by Alan Watts in the Asda car park in Biggleswade following a dispute over a disabled parking bay.

This case is an extreme example of what can happen when people try to police disabled bays themselves.

This campaign was first launched in 2002 and over the years we’ve seen small improvements in the levels of disabled parking abuse at supermarkets.

The 2019 Campaign This year Baywatch will take place in the month of June and DMUK is asking as many people as possible to survey their local supermarket car park 8

so we can get some really good data on the levels of Blue Badge parking abuse at supermarkets around the country. The survey only takes a few minutes to complete, copies can be requested from the office or you can visit our website and complete it online.

The campaign has support from Baroness Tanni Grey-Thompson, she commented: “I often experience problems when trying to park at my local supermarket because Blue Badge parking bays are not enforced properly.

There is a real lack of understanding about how essential these bays are to disabled people.

DMUK’s Baywatch Campaign plays a vital role in highlighting the issue of disabled parking abuse at supermarkets.

It is a campaign that I fully support and I intend to survey my local supermarket car park in June to help DMUK obtain the data they need to take the supermarkets to task over their disabled bay parking policies.”

Heidi Turner, Communications and Campaigns Director at DMUK, said: “Baywatch is one of the charity’s longest running campaigns and is really important to draw attention to the parking problems that disabled people face when just trying to do their everyday grocery shopping. It’s fantastic that the campaign has support from Baroness Grey-Thompson. This campaign relies on public participation and we hope her support will encourage others to get involved.”

DMUK Baywatch Sponsor DMUK has worked for many years with the British Parking Association (BPA) to improve parking for disabled motorists. This year the BPA has further shown their commitment to the work of DMUK by sponsoring DMUK Baywatch 2019.

Kelvin Reynolds, BPA Director of Corporate and Public Affairs says, “We are delighted to sponsor the 2019 Baywatch campaign. Effective parking management plays a vital role in everyone’s lives, especially people who are disabled and those needing to park their vehicles close to their destination. Parking bays reserved for Blue Badge holders must be managed properly to ensure they are not obstructed and used only by people displaying a valid disabled Blue Badge. We support this campaign to raise awareness of the absolute need for proper and effective parking management of Blue Badge parking bays everywhere and at supermarkets especially.”

Disabled Motoring UK

Visit Disabled Living's Online Shop

Visit: www.disabledliving.co.uk/online-shop or call: 0330 053 5930.

We are delighted to be working in partnership with Complete Care Shop to provide you with a comprehensive online shopping facility for equipment and products to make life easier.

Complete Care Shop has over 250,000 in stock items at competitive prices offering you choice from a wide range of manufacturers including mobility aids, daily living products, continence supplies together with telecare and telehealth equipment. In addition, Complete Care Shop has a reputation for excellent customer service which made the decision to enter into this partnership an easy decision to make!

The main advantage of purchasing via the Disabled Living website, is the opportunity for you or your clients to speak to Occupational Therapists or Continence Specialists for free impartial help and advice, ensuring unnecessary purchases are not made.

9

Access Audit Training at the Foreign Office

Chris Cammis, Disabled Living’s Disability Trainer & Advisor shares with you his most recent “assignment”.

This is Chris signing in to tell you about my latest exploit – the Foreign Office, no less!

We’d been contacted months ago to create a course on how to conduct an Access Audit. Not for me to carry one out, but to teach others. Not an easy task when you don’t know the skills of the delegates and you have to cover all major areas of disability.

It turns out there’s a “Services” team in the Foreign Office who may be called to visit and give advice to any of our embassies around the globe. “The Foreign Minister of Outer... is a wheelchair user and can’t get into the embassy”, “The Prime Minister of Inner... is huge and he cannot get into our toilets or find a comfortable chair to sit in”, “The wife of the Minister has very little sight and keeps tripping over the furniture” and so on.

So, my delegates have a very interesting job but don’t yet have sufficient skills to carry it out under all circumstances. Still, I’m always up for a challenge so I accepted.

10

In the event the travel was more of an issue than the course. I’ve never encountered so many random accidents, detours and road works in one journey for years. Still, I managed to travel down the day before and eventually reach my hotel in Southwark – a lovely area I know quite well – and parked up. (Parking can be hard to find in Central London so guaranteed, on-site parking was a huge plus).

Unfortunately though, no on-site restaurant, so off I wandered down the High Street, which was crammed with restaurants serving every cuisine known to humankind.

I eventually settled on Italian at Vapiano on Southwark Street. Brilliant staff, lovely food, and lots of atmosphere – I was so well looked after that at one point I left my table to order some more food and a fellow customer raced after me with my gloves because he thought I was leaving without them!

Eventually I arrive at an inner entrance, body search, bag search, “Look into the camera!” I find myself wearing a badge with my new pic on it! Into reception, more questions and finally I’m met by Sam and taken through to the training venue.

Lovely people, a great course, superb surroundings, well looked after – enjoyed every minute.

I wasn't left on my own for a second. At one point I said “You don’t need to follow me to the toilet thanks – I know where it is.” “Oh, but I do sir, officially I can’t leave you alone until you eventually leave the premises.”

Next morning my trusty Sat Nav got me to my destination. It actually told me “You have reached your destination” when I was exactly in the middle of a six lane major road, but off to the right I could see an archway, some huge bollards and several very serious looking security guards so I guessed I’d arrived.

In I drove. Security man puts his hand up.

“Stop Sir. Back. Back. Back!” I reversed quickly until he was satisfied I was at a safe distance then he proceeded to do a mirror check of the underside of the car. “I’m going to open every door Sir” which he did. “Who are you?” ”Who are you seeing?” “Proceed slowly, park over there, and enter over there.

Avoid the diplomatic spaces”

At the end of a very successful day Sam offered me a quick tour. Painted, vaulted ceilings, ornate staircases, cobbled courtyards, impressive statues and eventually some serious looking metal doors. Sam had all the passes and opened the last door to show me “Number 10”! We were actually on Downing Street exactly opposite the famous black door!

Completely deserted, not a soul in sighteveryone in Parliament as the Prime Minister suffered yet another Brexit defeat, but what an unexpected thrill?!

I love this job!

Chris Cammis Disability Trainer & Advisor

11

Do You Require an Access Audit?

Does your company or organisation meet the needs of everyone who is using your building? Disabled Living provide an Access Audit Service.

Does it involve me?

If you have a building that people access then yes it will involve you. The Equality Act 2010 states it is illegal to discriminate against a disabled person for reasons related to his or her disability.

Do I need to do an access Audit?

Yes. If you have a building that people need to access. You need to be able to show you have made a reasonable attempt to meet the needs of everyone using your building.

What are you looking at in the audit?

The auditor will be looking at different aspects concerning your building and how a disabled person may be affected by them. Things like entrances, lifts, stairs, corridors, toilets, car parking facilities and ways to escape in an emergency.

Our Auditor, Chris, who is a wheelchair user with a wealth of experience having worked with Councils, Housing Associations and even Rough Guides.

For further information on Access Audits contact our training team on 0161-6078200 or email training@disabledliving.co.uk

12

Grants for Individuals Disabled Living has access via the Directory of Social Change to over 1,500 charities who provide grants to children and adults. The grants may range from £10 food vouchers to larger contributions including grants for domestic items such as washing machines, wheelchairs and housing adaptations. Via the Equipz helpline we may be able to assist you or your clients to access funds which may be available from: • General Charities • Livery Companies, Orders and Membership Organisations • Armed Forces Charities • Occupational Charities • Charities by Beneficiary • Illness and Disability Charities

Friends of the Elderly

The Osborne Charitable Trust

Eligibility Friends of the Elderly supports older people in need to help them retain their independence and dignity. Applicants must be over 60 years (50 years for homeless) on low income and minimal savings.

Eligibility People in need in the UK and overseas, especially older people and those in ill health.

Types of grants one-off grants for essential items such as mobility aids, household items, property repairs and alterations.

Types of grant One-off and recurrent grants are given according to need and one-off grants in kind. www.theosbornetrust.com

www.fote.org.uk

Joseph Patrick Trust Eligibility People with muscular dystrophy or an allied neuromuscular condition.

Types of grant On average about 150 one-off grants of between £200 and £1,250 are made each year to partially fund the purchase of wheelchairs, scooters, electric beds, trikes, computers and so on. www.musculardystrophyuk.org/get-the-right-care-and-support/equipment-grants/jpt-grants/ 14

Disabled Living Equipz Team 0161 607 8200

Email: info@disabledliving.co.uk

Grants for Organisations Disabled Living has knowledge of a wide range of charities who provide grants to organisations. Each month we will highlight new funding opportunities.

The Headley Trust

Eligibility The trusts only fund registered charities or activities with clearly defined charitable purposes. None of the trusts directly supports individuals, education fees or expeditions.

Types of grants support for older people to live independently for as long as possible; to improve older people’s quality of life in residential care homes, including supporting people with dementia; support for carers of older people, both locally and nationally; ...and more. www.sfct.org.uk/Headley.html

The Royal Foundation of The Duke and Duchess of Cambridge and The Duke and Duchess of Sussex

Eligibility The Royal Foundation currently works in three areas which reflect the shared interest of The Duke and Duchess of Cambridge and Prince Harry. These are: Armed Forces, Young People, and Conservation.

Types of grants Develops programmes and charitable projects based on the charitable interests of Their Royal Highnesses by working with organisations which are already making a proven impact in their respective fields. www.royal.uk/royal-foundation

The Archer Trust Eligibility You are a small UK charity for whom a grant of between £500 and £4,000 will make a big difference.

In one way or another, you provide aid or support to a defined group of needy or deserving people, for instance those with physical or mental disabilities or the disadvantaged.

You are competently run and can support your application with up-to-date accounts.

Types of grants Provides funding for small UK charities who support needy or deserving people including those www.archertrust.org.uk with physical or mental disabilities and the disadvantaged.

Disabled Living Equipz Team 0161 607 8200

Email: info@disabledliving.co.uk

15

Hidden Stories Book Launch

The free book that aims to banish loneliness among people living with invisible conditions An arts charity in the south of England is addressing some of the most endemic social problems of our time – through the age-old power of storytelling.

Millions of people worldwide are affected daily by health conditions whose symptoms aren’t easily identifiable or understood by others.

Conditions that range from anxiety to autism, diabetes to chronic fatigue syndrome.

Hidden Stories is the result of months of creative workshops, where participants from across the south of England explored and shared the challenges of their day-to-day lives through storytelling, visual arts and soundscapes.

These people often face the added emotional distress of being isolated, misunderstood or stigmatised by society. Many are therefore discouraged from opening up, and even seeking the support they need, for fear of being judged.

The charity will donate all 8,000 printed copies of the book to communities, with the aim of sparking compassionate conversation around invisible conditions and mental well-being in general.

This problem is the focus of Hidden Stories, a powerful, playfully illustrated graphic novel based on the everyday experiences of people living with such conditions.

For more information or to arrange interviews, please contact Rachel Cohen (rachel@rootexperience.org / 07861 222187) or Kelly Smith (07786 737363).

Due to be published at the end of April by Brighton-based arts charity Root Experience,

Hidden Stories by Root Experience

16

Moving & Handling Trainers Update Only ÂŁ95 + VAT!

Click here to book onto this course

The benefits of attending an update are wide reaching: Keep practice relevant & current Motivate employees Reinforces skills and knowledge Ensures reputations remain good Help to retain staff Ensure continuing professional development Offering a participative theoretical and practical session each delegate will achieve satisfaction that they have updated and consolidated their knowledge and skills related to their work.

A wide range of topics can be included in the course which uses relevant legislation and current guidance , equipment and techniques.

Next training session Date: Thursday 23rd May 2019 Venue: Manchester Cost: ÂŁ95 + VAT (includes light lunch and refreshments) Please visit our website to book your place and for more information: www.disabledliving.co.uk/training/our-courses/moving-handling/m-h-update-for-trainers/ 18

Search for a Spoon

We are delighted to have Sam Smith as a regular contributor to the Disabled Living newsletters.

Sam has been working with vulnerable adults with complex physical needs for 4 years, supporting them in their own homes to lead fulfilling lives. He helps promote independence, choice and inclusivity by putting the service user first and ensuring their voice is always heard.

Supporting people to achieve long-term goals is one of Sam's main priorities. He does this through regular key-working sessions and evaluations. Sam will provide an insight into his day to day work, share his opinions and pass on invaluable tips.

If you've never dealt with one before, a PEG (percutaneous endoscopic gastrostomy) can seem hugely daunting. Even the name sounds intimidating. But with the correct advice and guidance, it needn't be. Now, when you initially begin working with someone who has a PEG, it can appear very invasive, so much so that going out may seem like the last thing you would want to do.

It may be the case that the person you're supporting is self-conscious about their PEG, so you need to be aware of their feelings. You also have to be comfortable with it and always make sure to be prepared.

When someone is fitted with a PEG, it supplies them with their nutritional needs per day; the amount depends on the individual.

Despite this, some people may still wish to frequent cafes and restaurants.

The person who I support is entirely PEGfed but has been allowed by the dietician to have tasters of food and drink. If this is the case, it pays to bear a few things in mind when opting to go out.

Firstly, and it may sound obvious, but before you go out, make sure you have everything, and I mean everything, before you leave. Make a list, print it out and stick it somewhere you and everyone who supports that person can see it.

If the individual doesn't have one already, you may want to invest in a decent backpack, as you're likely to be carting around a fair amount of stuff. Water bottle, medication, syringe(s), gloves, thickener, the list goes on.

19

I would also say that if you go to a cafe, for example, try and opt to sit near the bar or till, in case you need quick assistance with anything, or to carry something over if you're accompanying someone in a wheelchair, for example. You're also covered if, like me, you tend to forget things easily.

Speaking of which, I got caught out not once, but twice whilst supporting someone with a PEG, so I was forced to improvise.

We'd gone to the Christmas markets at his request, and he said that he wanted a drink.

We got the drinks, sat down and I made his up using the thickener. It was only when I went to give it to him that I realised I hadn't brought a spoon with us. So began the search for a spoon. Because of the severity of his condition, he needs to eat from a metal spoon, but it being the markets, the only spoons on offer were disposable, plastic or wooden. The first couple of vendors I asked didn't know, but someone suggested I ask at the soup stall. They did indeed have one and loaned me it, after a few questions and odd looks, and on the proviso I bring it back. So there was a happy ending to the story. And the point being, if you forget something you need, you think of a way around it.

And what to do if the PEG displays one of its many error messages? The temptation may be to panic and return home immediately as you're in unfamiliar surroundings. But just take a minute and see if you can't manage the issue there and then. The most common problem is a kink in the tubing, which can easily be rectified by running a hand along the length of it and straightening out any bends. If it's something you're not familiar with, then call the Abbott's nurse helpline and explain the issue. Problems will always crop up, and usually at the worst possible time, so don't let it stop you, or the person you're supporting, to get out there and do something!

A lot of this advice might seem like common sense, but believe me, if I had a pound for every time I've done something easily avoidable with the PEG, I'd probably have enough to retire on (or at least live comfortably for a while).

But I would have liked to have been given some advice such as this when first starting out supporting someone with a PEG. I hope someone reading this out there finds it helpful!

Sam Smith Support Worker & Freelance Writer

20

Charles Bonnet Syndrome and Esme's Umbrella

When eye-sight fails, so does confidence and its place can be taken by feelings of isolation, fear and loneliness. The world becomes a difficult place to negotiate and simple, everyday tasks require re-learning.

Adjusting to a sight-skewed or sightless world is bad enough, but there may be something else lurking which makes the quality of life suffer a further downturn. It is estimated that there are 1 million people of all ages in the UK who have lost more than 60% of sight and have developed vivid, silent, visual hallucinations. This condition is named after the man who documented it – Charles Bonnet Syndrome (CBS).

Too few ophthalmologists warn their patients that CBS might develop. It might not, but if frogs flow from the tap, a weary second-world war pilot appears in the room or flowering plants grow from the shelves, it helps a little to have been made aware of the condition.

Judith Fielding, a former actress and freelance health writer explains why she launched Esme's Umbrella, a charity named after her mother in 2015.

22

My mother, Esme, was in her early nineties and living a totally independent life – despite her diminishing eyesight due to glaucoma until she confided in me about the faceless people sitting on her sofa, the Edwardian tear-stained street-child who followed her everywhere and the grotesque gargoyle-like creature which hopped from table to chair.

Her ability to complete the Telegraph cryptic crossword every day proved her sanity, but – as I could think of no other reason for these ‘visions’, as she called them – the word ‘dementia’ rose between us.

Before I had a chance to contact the GP – who, we later discovered, had never heard of CBS – I read a small paragraph in a newspaper which described an experience that mirrored Esme’s and was caused by loss of sight. With the condition’s name to hand, I called her ophthalmologist.

Unfortunately, he refused to discuss CBS with me, nor explain why he had never issued a warning.

As too few GPs and hospital doctors are aware of CBS, it is entirely possible for mis-diagnosis to occur and then patients who do describe their experiences, find themselves ushered down the mental health route – sometimes, particularly for the elderly, on a one-way ticket.

Neither her GP nor her optometrist was aware of the condition and it was not until I consulted the internet and found Dr Dominic ffytche at King’s College London that I understood why the hallucinations appeared.

Dr ffytche is the sole, globally-acknowledged expert in CBS, having been the first person to research the condition. He explained that when sight diminishes, the messages from the retina to the visual cortex slow or stop, but the brain does not. It fires up and creates its own images which appear as everything from patterns, words, musical notes and maps to animals, birds, snakes, rodents, buildings, vehicles, trees, plants, grass, water, fire or people (real or Lilliputian-sized) alone or in groups and often in costume. Sometimes, the whole room changes into an alien place. Esme found herself in the middle of an Edwardian funeral procession and I have heard of medieval, candle-lit cathedrals, fast-flowing rivers and walls with countless doors. It is not unlike Alice in Wonderland but is not a mental health condition.

However, there are too many people in the UK who are living with CBS and fearing that the silent, visual hallucinations herald some form of mental health issue, they confide in no one.

This is an appalling waste of medication and NHS time, not to mention the distress caused to the patient. There are no consultants in the condition and no specific, proven medication to alleviate the hallucinations, although drugs for other conditions can be prescribed, but these have serious side-effects and are not necessarily appropriate.

I launched Esme’s Umbrella in 2015, in memory of my mother, to raise awareness of the condition and with Dr ffytche as my medical adviser. Since then, I have received some funding for research and work is being done at Newcastle University by my researcher – in conjunction with Dr ffytche – to identify the difference in the brain of a person with sight loss and CBS and someone with sight loss who does not develop the condition. The result could be a non-medication, non-invasive treatment which is currently being researched for all types of visual hallucinations at the same university.

Until a successful treatment – or preferably a cure - can be found, all we can offer is support and reassurance. Not everyone develops unpleasant hallucinations but even if the images are benign, it is the irritating frequency that affects every-day life. Some elderly people find they are unable to tolerate the perceived writhing worms and slugs on food and in drink, so they stop eating and drinking with tragic results. Others, with multiple hallucinations, become house-bound because they can no longer distinguish between what is real and what is not.

23

A few, who are distressed or embarrassed by what they see, contemplate suicide. Children and young people find their school-days or careers constantly interrupted.

I hosted the world’s first CBS Patient Day at Moorfields’ Eye Hospital in central London last year to coincide with CBS Awareness Day (16th November). The event was a great success and it was decided to focus on two aims. The first is to lobby for a tick-box to be added to the CVI form, which has to be completed by the ophthalmologist to register the patient as blind. The tick box will confirm that the doctor has informed the patient about CBS. The second is to lobby the NHS for specialist CBS Nurses, to whom doctors of all specialities can refer their patients.

There are Esme Room Support Groups springing up in local low vision charities and eye clinics in the UK, at which people with CBS, their families and friends can meet over a cup of tea to find that all-important reassurance. If you know someone with low or no vision who is experiencing silent, visual hallucinations, please reassure them that it might be CBS and point them towards my website, www.charlesbonnetsyndrome.uk which carries a full explanation of CBS, Dr ffytche’s research, coping strategies and experiences I have collected from people living with the condition. There is also a printable explanatory sheet which can be shown to the GP or Care Home staff. I have a Helpline, which is answered for me by the Eye Health Team at the RNIB – 020 7391 3299 – and an email address – esmesumbrella@gmail.com

24

It was over two hundred years ago, in 1760, that Charles Bonnet documented the experience of his grandfather but, shockingly, no research was undertaken – and no real interest in CBS shown by ophthalmologists or optometrists - until Dr ffytche began his work in the 1990’s.

The condition has been too easily dismissed as a ‘just a side effect of sight loss’ and ophthalmologists have not understood the implications of the condition on quality of life. The research in the UK is the only work being done in the world so it seems only right that we should call on the NHS to spear-head a campaign to raise awareness and create a proper pathway for diagnosis, treatment and support.

CBS stayed with Esme for the rest of her life, causing great distress to her and the family. She would be amazed that her name has become synonymous with CBS in the UK, but I know that she would encourage everyone in the sight loss community to add their voices to ensure that vital research is undertaken and that the one million people in the UK with CBS – plus the hundreds of millions all over the world - find the support that was lacking for her and a cure for this disturbing condition.

To donate for research please visit: www.justgiving.com/fundraising/esme sumbrella Judith Potts Founder of Esme’s Umbrella

Different Ways to View Our Newsletter

3 ways you can read our newsletter Online PDF Plain text Once you have signed up to our newsletter via www.disabledliving.co.uk you will receive our monthly e-newsletter via email which links to an application called Issuu.

If you would prefer an alternative method of viewing the newsletter, get in touch with us by sending an email to: info@disabledliving.co.uk to request a PDF or plain text version.

Some tips for visually impaired readers When viewing a PDF version of our newsletter via Adobe, you can change the accessibility settings by click 'edit' on the menu at the top of the screen, scroll down to 'accessibility' and there are different options to choose from including the set up assistant and change reading options.

You can use the + and - symbols when viewing the online version on Issuu to zoom in and out of the e-newsletter.

We have recently added an accessibility plugin to our website. The tool allows users to change the size of the text, colours, highlight hyperlinks, and change text to a reasonable font. To resume the usual settings you can simply click 'clear cookies' and the page will revert back to the usual look.

25

Thank You for Sharing Our e-Newsletter

Thank you to everyone who has shared our e-newsletter over the last month including:

Have you read our newsletter? Let us know by sharing on social media. @disabledliving

26

@DisabledLivingUK

Get in Touch with Us Disabled Living Head Office - Disabled Living, Burrows House, 10 Priestley Road, Wardley Industrial Estate, Worsley, Manchester M28 2LY

Telephone 0161 607 8200

Email info@disabledliving.co.uk

Website www.disabledliving.co.uk

For training rooms and sensory rooms contact Redbank House Tel: 0161 214 5959 Email: info@redbankhouse.com Website: www.redbankhouse.com