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BBC Radio 4 In Touch
01 July 2008

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Factsheet

AMD
Guest: Barbara Mcloughlan, RNIB Campaigns Manager;

The Royal National Institute of Blind People is backing legal action against Warwickshire Primary Care Trust which it believes is operating an unlawful blanket ban on providing treatments for the eye condition age-related macular degeneration, particularly wet AMD.

Last Friday Mr. Justice Underhill confirmed that a judicial review of the trust's policy is to be heard in the High Court in July. The RNIB argues that despite claiming that it treats such cases on their merits, not one of around fifty applications by people with this condition in Warwickshire have been granted.

Warwickshire PCT declined to appear on the programme but sent the following statement:

RESPONSE:
There are no instances where Lucentis has been funded as a treatment by Warwickshire PCT. Current NICE guidelines on Lucentis are out for consultation and final guidance has not yet been received. Lucentis is not routinely funded by the PCT but we will consider funding in exceptional cases. A total of 39 patients have requested funding for Lucentis since April 2007 through our individual cases process. None of these individuals were able to demonstrate exceptionality and they were not funded.
We would strongly disagree with your statement that there is a ‘blanket ban’ on Lucentis. We continue to consider each individual case with regards to Lucentis, as we would with any other new treatment or procedure which is not routinely funded.


ABOUT AMD
The macula is located at the back of the eye at the centre of the retina. It enables us to see what's directly in front of us and allows us to see fine detail. It plays a vital role in helping people to read, write and drive, and perform other detailed tasks. It also enables us to recognise faces and see colour.


DIFFERENT TYPES OF AMD

There are two types of AMD, 'dry' and 'wet':

Dry AMD is the commonest form of the condition. Cells in the retina fail to function properly as a person gets older. The cells don't take in enough vital nutrients and fail to clear by-products of cell functioning. This causes tiny abnormal deposits, called drusen, to be left under the retina, making it uneven.

In time, retinal cells degenerate and die causing sight loss.

This occurs very gradually over many years. Currently, there's no treatment for this type of AMD, although there are vision aids available that can help people to maximise the use of their residual sight.

Wet AMD accounts for 10 to 15 per cent of cases. It often develops quickly and is also known as 'neovascular AMD' because it involves the growth of new blood vessels behind the retina.

These new blood vessels are very fragile and so may leak fluid or blood. This results in scarring that causes rapid visual loss.

Fortunately, new treatments mean it's possible to treat the majority of cases.


CAUSES

It is unclear what causes AMD. It becomes more likely as a person ages because, over time, the cells in the macula become damaged and worn out.

Both eyes are usually affected, although one eye may be affected before the other. The good eye usually compensates for the affected eye and for many years this can disguise the fact that there’s a problem. There's no pain or redness of the eyes.

Because it's central vision that's affected, patients retain some residual vision, but this is at the periphery of their field of vision where images aren't in focus.

Any activity that requires detailed, clear vision is compromised, and in the late stages of the disease sight loss is so severe that patients are offered registration as partially sighted or blind.


TREATMENT

Currently, there is no medical treatment for dry AMD. However, not smoking and eating a healthy diet may help to slow the rate of deterioration.

Additional lighting and magnifiers can help those with dry AMD to make better use of their residual sight.

Medical breakthroughs in the treatment of wet AMD mean that, in most cases, treatments can prevent further visual loss, and in some cases restore partial sight.

There are three types of treatment for wet AMD:

  • Photocoagulation uses a hot laser to seal leaking blood vessels, but can only be used in a minority of cases where the leakage is not directly in the centre of the macula.

  • Photodynamic therapy (also known as PDT) uses a cold laser to seal leaking blood vessels. This involves injecting a drug that reaches and coats the abnormal blood vessels via the blood stream. The drug is then activated by shining a light at the coated blood vessels and it destroys them.

  • Anti-vascular endothelial growth factor (anti-VEGF) treatments target a protein involved in the formation of new blood vessels. High levels of VEGF can cause proliferation of blood vessels and fluid leakage. The drugs are injected under the macula. The number of injections varies. In trials the injections were given either every four or every six weeks, but in practice clinicians have to decide on the most appropriate treatment regime based on their assessment of the patient's response to the drugs. Anti-VEGF treatments have been shown to halt sight loss and in some cases restore it.

One type of anti-VEGF treatment is currently licensed in the UK and most treatment is private. Patient groups are campaigning for treatment to be made available on the NHS.

To find out if an anti-VEGF treatment would help your condition, talk to your eye specialist.


CONTACTS

THE MACULAR DISEASE SOCIETY
PO Box 1870
Andover
SP10 9AD
Tel: 0845 241 2041
http://www.maculardisease.org/
The Macular Disease Society is a self-help society for those diagnosed with any of the eye conditions encompassed by the overall name of Macular Disease.
The Society is dedicated to providing information and practical support so that those with the condition may make the most of their remaining vision.


RNIB
Royal National Institute of the Blind
105 Judd Street
London
WC1H 9NE
Talk & Support Services telephone number: 0845 3303723
Helpline: 0845 766 9999 (UK callers only - Monday to Friday 9am to 5pm)
Tel: 0207 388 1266 (switchboard/overseas callers)
Web: www.rnib.org.uk
The RNIB provides information, support and advice for anyone with a serious sight problem. They not only provide Braille, Talking Books and computer training, but imaginative and practical solutions to everyday challenges. The RNIB campaigns to change society's attitudes, actions and assumptions, so that people with sight problems can enjoy the same rights, freedoms and responsibilities as fully sighted people. They also fund pioneering research into preventing and treating eye disease and promote eye health by running public health awareness campaigns.


NATIONAL INSTITUTE OF CLINICAL EXCELLENCE (NICE)
http://www.nice.org.uk/


SOUND ARTIST

Johny Cassidy explored the world of sound art for the programme.


CARD READERS

The banking industry is starting to issue customers with personal card readers for use with online banking.

Some banks are giving card readers to customers which they will have to use when transferring money online.

The programme approached APACS who represent banks and credit card companies to clarify the industry stance.

RESPONSE FROM ACAS:
There are currently no industry plans to introduce personal card readers for online shopping. Obviously the issues around security of online shopping are high on the banks and retailers agenda and a number of possible solutions are being reviewed. However, I can reassure all your listeners that if there was to be any industry development of this nature, we would look to canvass opinion amongst a range of cardholders and online shoppers, including those with any visual impairment or like Liz, who may be deafblind, to ensure that solutions meet what individuals need and use. And that if any solution were not to meet those individuals' needs, that an alternative would be readily accessible.


CONTACTS

THE FOUNDATION FOR INFORMATION POLICY RESEARCH (FIPR)
http://www.fipr.org
The leading think tank for Internet policy in Britain. It studies the interaction between IT, Government, business and civil society. It researches policy implications and alternatives, and promotes better understanding and dialogue between business, Government and NGOs across Europe.


GENERAL IDENTITY THEFT INFORMATION
http://www.stop-idfraud.co.uk/downloads/ProtectingYourID_booklet.pdf
A copy of the the booklet ‘Protecting your Identity: A Practical Guide’ can be downloaded from the webpage:
Website: www.identityfraud.org.uk


CARD WATCH
c/o APACS
Mercury House
Triton Court
14 Finsbury Square
London
EC2A 1LQ.
www.cardwatch.org.uK
Card Watch aims to raise awareness about all types of plastic card fraud in the UK, and provides information to prevent fraudulent use of credit cards, debit card, cheque guarantee cards and charge cards


CIFAS
PO Box 1141
Bradford
BD1 5UR
http://www.cifas.org.uk/
A not for profit organisation run by major lenders to counter financial fraud. For information on the CIFAS protective registration system contact the credit reference agency Equifax (see below).

CIFAS Protective Registration
CIFAS is a not for profit organisation run by UK major lenders to counter financial fraud.

If you have been the victim of a mugging or burglary and personal identification documents have been stolen, there is a risk they could be used by the thief to obtain credit or other products and services fraudulently in your name. For an administration fee of £11.75 (£10 plus £1.75 VAT) CIFAS offers a service, provided on their behalf by Equifax, to protect your name and address from being misused in this way.

You may contact Equifax, and request 'Protective Registration'. A CIFAS warning will then be placed against your address marked Category '0' which indicates the individual has been recorded on the CIFAS database at their own request for their protection. CIFAS members when undertaking a search against your address will see "CIFAS-DO NOT REJECT-REFER FOR VALIDATION", whatever name they search for. They will then contact Equifax to establish the reason for the entry.

As a result of the entry CIFAS members will verify further the identity of applicants, and in some cases request further proof of identification, and this may mean you personally experience delays while your credentials are fully checked out.

If you believe the identity of a deceased person may be used by a fraudster to obtain credit or other products and services, a CIFAS Protective Registration may be placed by a relative or executor against the deceased person’s address.


GET SAFE ONLINE
http://www.getsafeonline.org/
GetSafe Online will help you protect yourself against internet threats. The site is sponsored by government and leading businesses working together to provide a free, public service. Has information on how to protect your PC


ANTI-PHISHING WORKING GROUP
http://www.antiphishing.org/
The Anti-Phishing Working Group (APWG)is an industry association focused on eliminating the identity theft and fraud that result from the growing problem of phishing and email spoofing. The organization provides a forum to discuss phishing issues, define the scope of the phishing problem in terms of hard and soft costs, and share information and best practices for eliminating the problem. Where appropriate, the APWG will also look to share this information with law enforcement.For more information, please contact us at the following addresses:

Report a phishing attack reportphishing@antiphishing.org



CONSUMER DIRECT
Tel. 0845 404 0506
Can advise on ID theft and other consumer issues.


CRIMESTOPPERS
Tel: 0800 555 111 (24 hours)
Website: www.crimestoppers-uk.org
Crimestoppers is an independent UK-wide charity working to stop crime. If you have any information about anyone involved in criminal activity and you wish to remain anonymous, you can call Crimestoppers. Telephone calls are not recorded, nor can they be traced, so you are not at risk from having your identity revealed. You may also be entitled to a reward


HOME OFFICE IDENTITY FRAUD STEERING COMMITTEE
Home Office
2 Marsham Street,
London
SW1P 4DF
Website: www.identitytheft.org.uk/
General advice on identity theft and how to avoid it.


FRAUD ADVISORY PANEL
Chartered Accountants' Hall
PO Box 433
Moorgate Place
London
EC2P 2BJ
Email: info@fraudadvisorypanel.org
http://www.fraudadvisorypanel.org/
The Fraud Advisory Panel is an independent body of volunteers drawn from the public and private sectors. They aim to raise awareness of fraud and carry out research with a view to advising policy makers. Have general advice on fraud for individuals and businesses.


ENVOCARE
http://www.envocare.co.uk/computers.htm
For information on recycling computers and the information on them.
The "Envocare" ® site was conceived, and will continue to be developed, as a central source of data on environmental issues.

Envocare Ltd was founded by a small group of individuals, with backgrounds in the electronics and IT disciplines, who wish to encourage the preservation and improvement of the environment. We think that many people share this ideal, but often lack easy access to relevant information


INFORMATION COMMISSIONER (ICO)
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
Tel: 01625 545745
Fax: 01625 524510
http://www.ico.gov.uk/
The Information Commissioner's Office is the UK's independent public body set up to promote access to official information and to protect personal information.

The ICO regulate and enforce the Data Protection Act, the Freedom of Information Act, the Privacy and Electronic Communications Regulations and the Environmental Information Regulations.

The ICO provides guidance to organisations and individuals.


BRAILLE
Guest: Dr. Mike Townsend, Publicity Officer for the Braille Authority, UK

The programme report on a proposal that there should be an attempt to unify English braille usage, having one system which takes account of both literary braille, and specialist codes such as maths.

A nationwide consultation is under way, and I'm joined by Dr. Mike Townsend, publicity officer for the Braille authority, Uk.

BRAILLE AUTHORITY, UK
http://www.bauk.org.uk/docs/bbchans.htm


GENERAL CONTACTS

RNIB
105 Judd Street
London
WC1H 9NE
Helpline: 0845 766 9999
Tel: 0207 388 1266 (switchboard/overseas callers)
Web: www.rnib.org.uk
The RNIB provides information, support and advice for anyone with a serious sight problem. They not only provide Braille, Talking Books and computer training, but imaginative and practical solutions to everyday challenges. The RNIB campaigns to change society's attitudes, actions and assumptions, so that people with sight problems can enjoy the same rights, freedoms and responsibilities as fully sighted people. They also fund pioneering research into preventing and treating eye disease and promote eye health by running public health awareness campaigns.


HENSHAWS SOCIETY FOR BLIND PEOPLE (HSBP)
John Derby House
88-92 Talbot Road
Old Trafford
Manchester
M16 0GS
Tel: 0161 872 1234
Email: info@hsbp.co.uk
Web: www.henshaws.org.uk
Henshaws provides a wide range of services for people who have sight difficulties. They aim to enable visually impaired people of all ages to maximise their independence and enjoy a high quality of life. They have centres in: Harrogate, Knaresborough, Liverpool, Llandudno, Manchester, Newcastle upon Tyne, Salford, Southport and Trafford.


THE GUIDE DOGS FOR THE BLIND ASSOCIATION (GDBA)
Burghfield Common
Reading
RG7 3YG
Tel: 0118 983 5555
Email: guidedogs@guidedogs.org.uk
Web: www.guidedogs.org.uk
The GDBA’s mission is to provide guide dogs, mobility and other rehabilitation services that meet the needs of blind and partially sighted people.


ACTION FOR BLIND PEOPLE
14-16 Verney Road
London
SE16 3DZ
Tel: 0800 915 4666 (info & advice)
Web: www.afbp.org
Registered charity with national cover that provides practical support in the areas of housing, holidays, information, employment and training, cash grants and welfare rights for blind and partially-sighted people. Leaflets and booklets are available.


NATIONAL LEAGUE OF THE BLIND AND DISABLED
Central Office
Swinton House
324 Grays Inn Road
London
WC1X 8DD
Tel: 020 7837 6103
Textphone: 020 7837 6103
National League of the Blind and Disabled is a registered trade union and is involved in all issues regarding the employment of blind and disabled people in the UK.


NATIONAL LIBRARY FOR THE BLIND (NLB)
RNIB Customer Services on 0845 762 6843
Email: cservices@rnib.org.uk
Web: www.nlb-online.org
The NLB is a registered charity which helps visually impaired people throughout the country continue to enjoy the same access to the world of reading as people who are fully sighted.

Trustees from the Royal National Institute of the Blind (RNIB) and the National Library for the Blind (NLB) have agreed to merge the library services of both charities as of 1 January 2007, creating the new RNIB National Library Service.


EQUALITY AND HUMAN RIGHTS COMMISSION DISABILITY HELPLINE (England)
FREEPOST MID02164
Stratford upon Avon
CV37 9BR
Tel: 08457 622 633
Textphone: 08457 622 644
Fax: 08457 778 878
Mon, Tue, Thu, Fri 9:00 am-5:00 pm; Wed 8:00 am-8:00 pm.
Enquiry: englandhelpline2@equalityhumanrights.com
www.equalityhumanrights.com


Equality and Human Rights Commission Helpline Wales
Freepost RRLR-UEYB-UYZL
1st Floor
3 Callaghan Square
Cardiff
CF10 5BT
0845 604 8810 - Wales main number
0845 604 8820 - Wales textphone
0845 604 8830 - Wales fax

9:00 am-5:00 pm, Monday to Friday (an out-of-hours service will start running soon)

Enquiry: waleshelpline@equalityhumanrights.com
www.equalityhumanrights.com




Equality and Human Rights Commission Helpline Scotland
Freepost RRLL-GYLB-UJTA
The Optima Building
58 Robertson Street
Glasgow
G2 8DU
0845 604 5510 - Scotland Main
0845 604 5520 - Scotland Textphone
0845 604 5530 - Scotland – Fax

9:00 am-5:00 pm, Monday to Friday (an out-of-hours service will start running soon)

Enquiry: scotlandhelpline@equalityhumanrights.com
www.equalityhumanrights.com


DISABLED LIVING FOUNDATION
380-384 Harrow Road
London
W9 2HU
Tel: 0845 130 9177
Web: www.dlf.org.uk
The Disabled Living Foundation provide information and advice on disability equipment.


The BBC is not responsible for external websites 

General contacts
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Transcript

IN TOUCH

TX: 01.07.08 2040-2100


PRESENTER: PETER WHITE

PRODUCER: KATHLEEN GRIFFIN


White
Good evening. Tonight, we report on the latest round in the battle to try to force health trusts to pay for sight saving drugs, this time it'll be fought in the courts. Reporter Johnny Cassidy will be exploring the sonic world of plunderphonics and turntableism.

Clip
Music and noise.

White
More later - I'm sure you can hardly wait! And from sound to touch and batten down the hatches - there's a new proposal to make changes in the Braille code, so why this time?

But first: the Royal National Institute of Blind People is backing legal action against Warwickshire Primary Care Trust which it believes is operating an unlawful blanket ban on providing treatments for the eye condition Age-Related Macula Degeneration, particularly wet AMD. Last Friday Mr Justice Underhill confirmed that a judicial review of the trust's policy was to be heard in the high court in July. The RNIB argues that despite claiming that it treats such cases on their merits not one of around 50 applications by people with this condition in Warwickshire have been granted. Well this review is being brought on behalf of three claimants, including Raymond Liggins and Raymond joins us on the line now. Just explain what's happened in your case.

Liggins
Well I was on holiday and I noticed that the straight lines were all irregular and I knew then that something was happening because I'd had wet macular degeneration in 2004 in my left eye. But when I got back home from holiday I went straight to the hospital, they done all the tests and they said yes you've got wet macular degeneration. But they said I couldn't have the treatment that was available on the National Health Service. The only thing that I could have was Lucentis injections but I'd have to pay for that.

White
What was your reaction to that?

Liggins
I was quite upset really. We had put aside a small amount of savings for our old age, you know, to buffer us against inflation and holidays and that sort of thing and we decided then that we'd actually pay for three.

White
And how much did that cost you?

Liggins
£3,500.

White
Which is a lot of money and presumably especially as you'd thought that you'd put that aside to help you?

Liggins
Yes we did. We didn't want to depend on the state to keep us in our old age, we just wanted that buffer against that.

White
And you're also, I think you're looking after your wife as well aren't you?

Liggins
My wife had a stroke, she's got a weak leg and arm and she's fell down the stairs twice and she trips over quite badly and she's quite energetic in her mind sort of woman, you know she's - she wants to do things but she can't.

White
Now I gather your son lives in Scotland, what would be the situation if you lived there?

Liggins
If I'd have gone to live in Edinburgh after about five months I could have it on the National Health Service.

White
Right. Well we wish you the best of luck, thank you very much for joining us on the programme.

Liggins
Thank you very much.

White
Now also with me is Barbara McLoughlan who is the RNIB's campaigns manager. What are you seeking to establish Barbara?

McLoughlan
We are supporting these two or three patients because we believe that Warwickshire PCT is operating an illegal de facto ban on treatment. The legal advice that we've got says that the patients have a very good case and that's why the patients are bringing a case for judicial review.

White
How does Warwickshire's record on this compare with other PCTs?

McLoughlin
Warwickshire seems to be one of the PCTs that provide no treatment at all, there are not that many in the country who don't provide any treatment at all. At the moment about 50% of all PCTs actually provide treatment for all patients. So with Warwickshire PCT, because they have medical grounds only, that no patient with wet AMD can realistically meet, it constitutes a blanket ban and patients just do not get any treatment at all.

White
Yeah because you kind of wonder what could constitute a special case under the circumstances, if Raymond with his sight threatened and as a carer, if he's not a special case who is kind of thing.

McLoughlin
That's right and one of the three patients taking the judicial review is a carer for her brother with Down's Syndrome and still she isn't being seen as a special case. It has to be said that the medical reasons would be that they would have to prove that they would benefit more than other patients from the treatment or that they belong to a very small group of patients and would therefore be exceptional. Now people with wet AMD just cannot meet those criteria.

White
Are you regarding this as a test case?

McLoughlin
We feel very strongly that it is a case that is important, not only for the patients in question but also for all other patients in the area and even beyond because it shows very strongly that PCTs should look at the evidence that's available, they should ideally have a policy to treat at least some patients and where they have an exceptions policy that exceptions policy should allow some patients again to be treated. So we think it has wider implications than just those three cases.

White
Well we did of course invite Warwickshire PCT to appear on the programme, they declined but they sent us this statement:

Statement
There are no instances where Lucentis has been funded as a treatment by Warwickshire PCT. Current NICE guidelines on Lucentis are out for consultation and final guidance has not yet been received. Lucentis is not routinely funded by the PCT but we will consider funding in exceptional cases. A total of 39 patients have requested funding for Lucentis since April 2007 through our individual cases process. None of these individuals were able to demonstrate exceptionality and they were not funded. We would strongly disagree with your statement that there is a blanket ban on Lucentis. We continue to consider each individual case with regards to Lucentis, as we would with any other new treatment or procedure which is not routinely funded.

Barbara McLoughlin is still with us. That's their statement, what's your reaction, particularly on the denial of a blanket ban?

McLoughlin
I would say it says it all because it confirms that no patients have been funded through the exceptions policy and we believe strongly that on the legal advice we've received that they will be found to be operating a blanket ban and that that is illegal. So we would like the PCT to reconsider their stance and unfortunately at the moment it looks like that has to be done in court.

White
We'll bring you more on that case when it arises. Barbara McLoughlin thank you.

Now, blind and partially-sighted people don't need to be persuaded of the value of sound as our item on echolocation a couple of months ago indicated we use it all the time, consciously and unconsciously. And as we travel around the world is giving off sonic signposts wherever you go, which are as effective as visual signs to tell you where you are. But can sound provide art, which is as aesthetically pleasing as say a painting? Well it's a subject which has interested our reporter Johnny Cassidy, he joined Mani Djazmi the other day to bring us the results of his investigations.

Cassidy
Firstly, I didn't realise that so many people were involved in sound art or indeed that there was so many sub-sections of it underneath the main umbrella. Did you know that plunderphonics is used in [indistinct word] sounds and weaving them into a type of audio patchwork quilt. Or that turntableism is doing the same but with old vinyl records?

Demonstration of sound art

This piece is by a sound artist from Liverpool. Philip Jeck uses old vinyl records and record players that he finds all over the place - places like junk shops and skips - and he breathes new life into otherwise forgotten songs and sounds by stitching them altogether. Now this piece is about Turkey and whilst I have no idea at all what it's supposed to represent I find it really intriguing and quite soothing.

Turkey art

Djazmi
Are there many sound artists out there?

Cassidy
There are and that is the beauty of the medium - Amy Slavin is a blind sound artist based in Lincoln and she's passionate about the importance of sound within her work.

Slavin
Sound is very underrated and I think it's ignored a lot of the time, people regard it as incidental. And of course for blind people sound is absolutely essential. I think we have a more sophisticated understanding of sound and I think it's very natural for us to be - we ought to be - at the forefront of the cutting edge of working in sound because - I mean it's a cliché and everybody annoys us by saying what amazing ears we have and all of this and oh you must hear ever so well and of course the truth is that we don't hear better than anyone else but we do listen much better. It just makes perfect sense that any industry that revolves around sound we ought to be absolutely at the centre of it and that's what I'm working on doing.

Wave Power

Cassidy
This is a piece that Amy has created, it's called Wave Power.

Wave Power

Cassidy
Amy is fascinated by what we perceive waves to be and in this piece she has layered over what people's concepts of waves are over what hers are. Now the piece I guess I think is best listened to through headphones just so you can find the delicate intricacies of how it's put together but what I really like about it is the hidden depths that you find it the more you listen to it, it's almost hypnotic.

Wave Power

Djazmi
Yes I suspect there may be one or two people who might just regard this as being noise but you're a fan?

Cassidy
I am yeah, I like it, I find it intriguing.

Djazmi
So apart from being pleasing to the ear are there any practical uses of sound art for blind and partially-sighted people?

Cassidy
Someone I spoke to about the application of sound art is Dr Marcus Jones. Now he is the artist in residence at York St. John University in the City of York and he has been involved in a project that has evolved into something that could be useful to blind or visually-impaired people.

Jones
Rather than us producing abstract sound art I thought the obvious thing to do would be to produce a sound walk across the campus, so that visitors or students or members of staff at university they would find it useful if they were to be directing a particular direction across a campus to a particular location that they could then use this particular sound walk to navigate their way across the university campus just by simply dropping an MP3 into their - or a series of MP3s into their MP3 player they would then be able to navigate their way across the university through sound.

White
Johnny Cassidy with Mani Djazmi there.

Now a few weeks back we carried an item about the introduction of personal identification cards for people wanting to do their banking and other financial transactions online. And the possible implications of this for blind people - good and bad. One person who's very concerned about this development is Liz Ball. Liz is deafblind and this is what she told us in her e-mail:

E-mail from Liz Ball
My biggest concern about personal card readers is what happens if they become necessary for online shopping. Quite literally I will starve if I'm prevented from using online grocery shopping. I can't go into a shop alone because I can't see where items are, select the right ones, or communicate with staff. So asking for staff to assist is not an option. I manage to book a communicator guide - a person trained to support deafblind people - about once every two months, I couldn't possibly survive doing one grocery shop every two months. I have to be able to use online shopping and that means I need an accessible card reader as soon as they're introduced. This is a striking example of why the needs of deafblind people must be considered as unique. The banks have considered the access needs of blind people but have not thought about deafblind people.

Well we approached APACS - that's the UK banking industry voice on fraud issues who represent banks and credit card companies - and this is what they told us:

APACS
Firstly, I'd like to put Liz's mind at rest. There are currently no industry plans to introduce personal card readers for online shopping. Obviously the issues around security of online shopping are high on the bank and retailers' agenda and a number of possible solutions are being reviewed. However, I can reassure all your listeners that if there was to be any industry development of this nature we would look to canvas opinion amongst a range of card holders and online shoppers, including those of any visual-impairment or, like Liz, who may be deafblind to ensure that solutions meet what individuals need and use. And that if any solutions were not to meet those individual needs that an alternative would be readily accessible.

Now, as I know to my cost, mention the words and Braille and change in the same sentence and you're likely to end up with a riot on your hands. Those of us who use Braille - not enough in my view - tend to be very protective about it and have a tendency to regard it as sacrosanct. But there is now a proposal that there should be an attempt to unify English Braille usage, having one system which takes account both of literary Braille and specialist codes, such as maths. Well a nationwide consultation is underway and I'm joined by Dr Mike Townsend, who's publicity officer for the Braille Authority UK.

Mike, why are these changes necessary?

Townsend
Well, first of all, it would unify Braille across the English speaking world. So wherever Braille is produced the idea is that you can read it - whether it's produced in Australia or the United Kingdom. The other thing that you mentioned particularly is that it unifies Braille across subjects. So that when you're learning Braille you don't have to unlearn a code and then re-learn something when you're moving into mathematics or chemistry of something like that. The third thing about UEB is that it makes automatic translation much more straightforward. So if you want lots of Braille and you want it quickly it's much better if you don't have to intervene and hand tool bits of it.

White
But I mean, as I indicated, change worries people, what would this mean to the ordinary Braille reader?

Townsend
Well actually it probably wouldn't mean a great deal. I did run a symposium at Sight Village last year without any axe to grind or anything like that, I just put the Braille out and said - now what do you think of this? Most people actually read it and said - it's okay, what's the deal, what's the problem? So for a lot of people unified English Braille code will not make any difference at all. Some contractions will go, like - if we're getting technical - the BLE and the COM contractions. But basically you probably won't notice a great deal in reading it. You see Braille - the Braille we use basically is pretty unchanged for about 70 years, the aim of UEB is to provide a Braille for the future. Now us old hands, we've been reading it for many years, you and I learnt it at the same time those many years ago at Bristol but nowadays printing and orthography has changed so much, the way you look at - if you look at the magazine today and look at the magazine when we were lads it wouldn't look very much the same. And Braille needs to be able to reflect what print looks like for mainstream users.

White
Right. I suspect that there will be a good big deal of debate about this as time goes on. Just explain at the moment what do you want people to do, what does this consultation consist of?

Townsend
Okay. There is a Braille document that has gone out to every Braille user, that means Braille reader, a teacher of Braille or a transcriber. I'd like people to read that document, look at the samples and respond, to say what they think of this Braille and whether they would be happy for it to be A code used within the United Kingdom, not the unique code but A code.

White
Right. Well information about how to get hold of that will be on our website and on our factsheet but the closing date, I think, for the consultation, that's the 30th September isn't it?

Townsend
That's right please. And please everyone respond, we want to know what you think.

White
Mike Townsend for the time being thank you very much.

That's it for today. We'd like your views on that and everything else you've heard in the programme. You can call our actionline on 0800 044 044 or e-mail us at our website and there's podcast of today's programme available from tomorrow. From me, Peter White, my producer, Kathleen Griffin, and the rest of the team, goodbye.


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