Christmas 2006: Issue 16

This information is also available in Braille, on tape or, if you prefer, by e-mail. If you wish to receive your newsletter in any of these formats, give us a call on 01495 763650 and speak to Sam.

Newsletter Contents

Clicking one of the content links below will take you to the relevant section if you do not wish to read the entire newsletter.

Low energy lightbulbs - FREE!

Powergen have offered a pack of 4 low energy light bulbs to anyone who is registered blind or partially sighted. They estimate that use of low energy bulbs ( 2 are 100watt and 2 are 60watt) will save around £40 on your energy bills over a year. They do take slightly longer to warm up than standard bulbs so are not suitable for areas where immediate light is needed, ie top of the stairs, bathroom or kitchen. However, they are entirely free provided you will give your name and address to us. As we have no postage budget, we would like you to come into the resource centre to pick them up when you are next visiting; don't forget to ask Samantha on your way out!

Also available are the power down plugs that you can use to interface between computers and the power supply so that when something is on standby it no longer uses up power (normally items on standby use up to 2/3 of the electricity of items in use). Again this will help you save money on your electricity bill and help the environment at the same time. They can also be used for TVs left on standby but of course if you use the timer for anything this would be powered off.

For more information telephone 01495 763650.

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Carers in Torfaen

The 2001 Census figures suggest that many people in Torfaen are caring for a loved one, relative or friend in an unpaid capacity with very little support from any outside agency.

People often fail to recognise themselves as carers; they may see what they do as their duty or as a natural progression of their marriage vows or parental responsibilities.

A new film, introduced by BBC Radio Wales broadcaster Roy Noble, highlights the important role played by Torfaen's carers.

In Who Cares? carers of all ages and backgrounds talk honestly about the impact their caring role has had upon their lives and how the practical and emotional support they now receive has enabled them to continue caring.

The film has been produced by the Council and Torfaen Carers Centre to encourage Torfaen's 'hidden' carers to seek the support they deserve.

Who Cares? is available on DVD, video or audio tape. To receive your free copy, please contact Torfaen Customer Care on 01495 762200 or Torfaen Carers Centre on 01495 753537.

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Calibre Audio library

Calibre Audio library is known for its friendly reliable service of audio books. They offer free postal service with a choice of 7,000 audio books, both fiction and non-fiction and around 1,000 books for children. Their books are available on standard cassette and have been read by professional actors and broadcasters.

They are now also able to offer a new digital service on MP3 disks. like the cassette service, the MP3 service will be free of charge. Users will find that there is improved sound quality on the new digital service and also the advantage of the books, in most cases, being recorded onto just one disk.

The existing cassette service will be maintained as long as possible and new titles will be available in both formats. For information about any of Calibre's services, or to join the library, please contact them on 01296 432339, or by email (this action will open your email client in a new window) or visit their website at Calibre Audio library . Or you can write to Calibre Audio library, Aylesbury, Bucks HP22 5XQ.

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Accessible Google Searches

A blind developer at Google has adapted their search engine to prioritise results that are accessible to visually impaired web users. The Google Labs project (which could be developed further) has been welcomed by RNIB and its US counterpart. Why not give it a try at Google Labs Accessible Search

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Digital Divide Programme

Thanks to Communities@One we have some funding to run some courses that will help people keep up to date with digital equipment coming online now. So if you would like some help with computer training, learning how to use a digital CCTV, Talking Books, Digital Radios, or anything that is to do with technology, please give us a ring and we'll try to help. The courses will be running from the New Year.

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Staff

We're pleased to be able to welcome several people to our staff, some of which are paid, some not! So that you feel you know who you are talking to, here's a quick run down:

On the admin front we have Samantha (known as Sam) who primarily answers the telephone, edits the newsletter, teaches Braille, and helps run courses. Cathy is the office manager and is also fulfilling the eye clinic officer role. Allan has a variety of roles including driving the bus, distributing the free wireless and cd players, assisting people with a range of problems and managing storage. Sadly Allan retires at the end of this month, but we hope to have a new driver before Christmas.

Emma and Becky have joined us to help with administrative tasks generally. lissa is in charge of the resource centre and managing stock and purchases.

Rebecca comes in to help with the resource centre but, along with Patricia, has taken over managing some of the longer waiting lists for the rehab workers. If you are waiting for rehab you may well get a call from one of them!

Rehab workers include Diana (Newport), Marianne (Caerphilly), Emma (Caerphilly and Torfaen) and Nita. Rehab workers can help with your mobility, your independent living skills, communications and more. If you feel you could do with some support in this way, please give us a call as we have a variety of ways of helping you.

Andrew manages the Supporting People staff and is currently helping out with IT and the computer buddy scheme. Trish, Kath, Nina and Wendy also work on the Caerphilly Supporting People project that enables people in that unitary authority remain independent in their own homes. If you feel you would like to have someone from Supporting People come and talk to you about your needs please call 01495 763650.

Diane Smith and Sue Challenger are welfare rights advisers for Caerphilly and Newport respectively, so if you haven't had your benefits checked for over a year and you're from one of these areas please call us.

Terry is our volunteer coordinator and is usually the first point of contact for our various clubs. Shaun and Ceinwen help with computer and Braille classes. Jane, Jean and Karen help with the ringaround service for isolated or housebound people.

Sharon has taken over from Pam and generally tries to balance the limited resources with the ever expanding needs of 3500 people. Nirmala helps with organising Sharon, fundraising, and manages projects.

We also periodically still get blessed with visits from Gillian, who is particularly good at helping with awareness training courses.

If you haven't yet visited our new centre in Pontypool, do get in touch and we'll see what we can do to help. We can also do demonstrations and bring equipment to clubs and activities. Just give us a call 01495 763650 or contact us by email. This action will open your email client in a new window.

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Torfaen Club

We now have a social club meeting on alternate Monday afternoons in the Resource Centre. This is an opportunity to get together for a chat, listen to a speaker, have some lunch together, take part in activities and outings and much more. If you live in Torfaen and would like to take part please call 01495 763650.

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Expert Patient Programme Course

If you are depressed about your sight loss and struggling to cope with isolation and depression, we have a course for those living in Torfaen and Newport that will help you manage those feelings more effectively. This course will start in January 2007 on Tuesday mornings and you will meet others who have the same difficulties and issues as you. For more details contact 01495 763650. Please note that places are limited and will be offered on a first come first served basis.

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Technology Day

Our traditional technology day is being expanded to encompass a much larger number of exhibitors and we will therefore be locating it at another site. We're hoping to be able to use the new premises of the VI Education unit at Llantarnam, but in the meantime make sure you reserve the date which will be 2nd May 2007.

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Legacies and Bequests

Whenever we receive a legacy or a bequest we are always very grateful and money is spent on local people. Last year we were able to purchase enough Perkins Braillers to start a regular Braille training course, and have so far successfully trained 15 people. We were also able to refurbish our computer suite and are managing to support over 800 people at various events. If you would like to leave a donation to Gwent Association for the Blind please make sure your solicitor knows our details; all too often we have found money that was intended for use at our clubs going to a much larger national organisation like the RNIB simply because a solicitor didn't realise that it was meant for us. If you have already made us a beneficiary in your will, then thank you!

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Open Days

Following the huge success of our 'tea and bun' days, we will be doing them again in 2007. Obviously we will advertise these nearer the time to the individuals residing in each area, but in case you like to plan ahead please note the following dates:

• Newport:                11 April 2007
• Caerphilly:              6 June 2007
• Monmouthshire:      11 July 2007
• Torfaen:                 8 August 2007
• Blaenau Gwent:      12 September 2007

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Computer and other Equipment Training

We have funding to provide training on a variety of equipment including talking books, digital radios, computers, scanners and much more. If you would be interested in learning how technology can help you overcome some of the difficulties associated with sight loss telephone 01495 763650.

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Rambling Club

If you enjoy walking and would like to join a group of visually impaired people who walk monthly, please call 01495 763650 and ask to have your name added to the distribution list. Walks are around 3 miles, tend to be about 4 hours long including breaks and are always on very sunny, dry days (ho ho). This is a really friendly, social, group and is an excellent way of keeping fit and healthy, so if you would like to come along please contact us. We are offering transport in specific areas, but please telephone and speak to Allan.

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GAB Annual General Meeting

If anyone would like to come along to the 2007 Annual General Meeting it will be on 10 July 2007 at 6.00pm at Bradbury House, Park Buildings, Pontypool. Unfortunately we cannot offer transport to this, but you are very welcome to come.

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Fundraising Plea!

Now for the sob story ..... this year our 12 year old minibus failed its MOT for the first time. We have, of course, now had it brought up to standard, but it is obviously an indication that the time has come to send it to the Big Bus Station in the Sky and look for a new one. We are desperately seeking funding from a variety of sources, and if anyone is thinking about doing a sponsored event we would be very happy to provide sponsorship forms.

Our new bus will be fully compliant with the DDA and will be able to transport a wheelchair safely, as well as be much easier for people to get into and out of. Unfortunately it is likely to be very much more expensive because of these requirements. If you can help with doing a coffee morning, or a bring & buy, or indeed any fundraising at all we would love to hear from you.

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Latest News: Wet Macular Degeneration (Information released by the RNIB October 2006)

On 5 October 2006 new evidence on the effectiveness of Lucentis in treating wet AMD was published in the New England Journal of Medicine. The study found Lucentis slowed vision loss in around nine out of 10 patients and improved vision for about a third.

The 716 patients who took part in the study were given eye chart tests before and after receiving the drug, or a placebo. Overall, nine out of 10 of those given the drug lost fewer than 15 of the letters on the chart two years after starting treatment. This compared to five out of 10 of the patients given a placebo.

Thousands of people a year in the UK get wet AMD and it rapidly leads to sight loss. Although this drug is not a cure it offers patients a chance of having their vision restored.

At present Lucentis is only available privately in the UK on what is called a named patient basis. This means that patients who are eligible for treatment can ask their ophthalmologist to contact Novartis with a request to make Lucentis available to them on the basis of a needs statement.

It is important to know that even patients with a visual acuity as low as 6/90 (well below the threshold for registration as blind) have been shown to benefit from treatment. However, the abnormal blood vessels that have caused the sight loss need to be active for treatment to be successful. In practice this means that patients who lost their sight many years ago and have not had any further deterioration since are less likely to be eligible. Treatment costs can vary but are approximately £1,000 per injection.

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About the new AMD Treatments

Macugen (pegaptanib) is the first licensed anti-VEGF treatment for the treatment of wet AMD and became available in the UK in May 2006. Macugen is also licensed for use across all countries of the EU, US, Canada, Brazil and Philippines and more than 56,000 patients have been treated with the medicine to date. The drug targets VEGF (Vascular endothelial growth factor), a protein that helps the formation of new blood vessels and fluid leakage, the characteristics of wet AMD.

Treatment with Macugen requires one injection administered every six weeks. Injections are continued as long as patients benefit for a maximum of two years. Treatments costs can vary substantially from hospital to hospital, starting from around £600 per treatment.

Lucentis (ranibizumab) was specifically developed for intraocular use in the eye to treat the underlying cause of wet AMD by targeting the molecular pathway that controls the formation of new blood vessels. Lucentis is designed to bind and inhibit VEGF-A, a protein that is believed to play a critical role in angiogenesis (the formation of new blood vessels). Although Lucentis has not yet been licensed in the UK it has in the United States. The U.S. Food and Drug Administration (FDA) approved it for the treatment of Wet AMD in June 2006.

Finally, there are increasing discussions about the use of another anti-VEGF treatment that has not gone through proper clinical trials. This treatment, called Avastin, is being used by some ophthalmologists in the UK on a private basis. However, until clinical trials have proven its safety and efficacy the RNIB does not recommend its use. A clinical trial has just been announced by the National Eye Institute in the United States.

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NICE Appraisal

Macugen and Lucentis are now going through the National Institute for Health and Clinical Excellence (NICE) appraisal process and this is unlikely to be completed before August 2007.

Macugen is already available for treatment of wet AMD and Primary Care Trusts (PCTs) can decide to fund it on the NHS on a case by case basis. We believe that consultant Ophthalmologists should be able to provide treatment funded by PCTs. It would not be right for PCTs to refuse to pay on the basis that NICE has not yet issued guidance. The same will apply to Lucentis once it has been given marketing authorisation in the UK (expected towards the end of 2006).

Andy Burnham the Minister of State for Health said:The Department has made it clear that patients should not be refused a treatment simply because guidance from the National Institute for Health and Clinical Excellence is unavailable. In these circumstances, we expect primary care trusts to take full account of available evidence when reaching decisions on whether to provide the treatment. GAB stresses that these new treatments are for Wet Macular Degeneration only, and are not suitable for patients with Dry Macular.

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Free Home Insulation from Powergen to help cut your Energy Bills

Did you know that up to a third of heat can escape through the walls of an un-insulated home? By registering for Powergen's free scheme and installing cavity wall insulation, you could save up to £235 a year on your heating. This saving is based on Powergen's figures for a typical 1950's three bed semidetached property.

Their home insulation scheme is designed to help you reduce your energy bills and make your home warmer and more comfortable and you don't even need to be a Powergen customer to apply.

Improving the insulation in your home will provide the following benefits:

• makes your home warmer in the winter and helps prevent condensation on your walls and ceilings
• reduces heat build-up in the summer, keeping your home cooler
• reduces the energy you use, helping to reduce carbon dioxide emissions and protecting the environment
• typically takes around half a day to install and is guaranteed for 25 years

To receive free cavity wall insulation you need to be in receipt of one of the following qualifying benefits or tax credits:

• income support
• housing benefit
• council tax benefit (not including single occupancy reduction)
• income-based jobseeker's allowance
• attendance allowance
• disability living allowance
• war disablement pension (which must include mobility supplement or constant)
• attendance allowance
• disablement pension credit (which must include constant attendance allowance)
• child tax credit (with a household income of less than £14,600)
• working tax credit (with a household income of less than £14,600)
• state pension credit

Even if you are not in receipt of a qualifying benefit, you could still save money on the price of cavity wall insulation with prices from just £210.

To find out more please call Powergen free on 0800 479 0162 quoting reference: VIP1106, between 8.30am and 5pm Monday to Friday. The scheme is available to homeowners and private tenants in England, Scotland and Wales. This scheme excludes housing association, council tenants, flats and maisonettes. Other terms and conditions also apply.

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Expert Patient Programme

In January we are starting a 6 week Expert Patient Programme course in which you can learn to deal with the isolation, stresses and problems you experience because of your sight loss. Sessions are likely to last around 2 hours, and you will be able to pick up lots of hints and tips as well as meeting a group of like-minded people.

If you would like to take part, numbers are limited, so call 01495 763650 to book a place. Whilst we would be most grateful if people could make their own transport arrangements, we will help wherever we can.

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Weston Holiday

After a hugely successful holiday again in 2006, we are now taking bookings and deposits for the 2007 holiday. The dates have been provisionally booked for 18th - 25th August, somewhat earlier in the year than usual, and the cost will be approximately £350. This holiday is suitable for anyone who is able to look after their own health and personal needs as it is a hotel not a hospital, but if you would like to book a twin or single room please call 01495 763650 to discuss your requirements. There are only 20 places available and a nonreturnable deposit of £20 per person will be necessary to secure a place.

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Sports Day 2007

We are intending to run our annual sports day again in 2007 and hope to be back at the Pontypool Leisure Centre. We will be offering tasters of sports including archery, bowls, tandem riding, dry slope skiing, swimming, line dancing and much more. The date will be confirmed early in the New Year so look out for it in our next newsletter!

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Clinical Futures

The Local Health Board is consulting on the provision of a new model of care for the NHS in Gwent, known as Clinical Futures. The objectives are to provide:

• safe high quality treatments
• improved access to clinics
• integrated services
• more primary care from GP surgeries
• a network of 6 local general hospitals in Newport, Monmouthshire, Torfaen, Blaenau Gwent and Caerphilly. Some to be at existing sites, others at new sites.
• a single specialist and critical care centre serving the whole of Gwent, possibly at the Llanfrechfa site.

If you would like more information on any of this, please contact 01633 623461

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Volunteers

We are always on the lookout for volunteers to help both in our resource centre or as a driver or home visitor. We also need people to help out in our Social Clubs in Monmouth, Newport and Blackwood areas. If you or a friend or family member feel you could spare as little as a couple of hours a month we would be only too pleased to hear from you. For more information, call Terry on 01495 763650.

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Useful Telephone Numbers

Gwent Association for the Blind: 01495 763650
Bradbury House
Park Buildings
PONTYPOOL
NP4 6JH

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Social Services

Newport:               01633 656656
Blaenau Gwent:      01495 322770
Torfaen:                01633 648777
Caerphilly:             0808 1002500

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Monmouthshire

Abergavenny:        01873 735900
Chepstow:             01291 635666
Monmouth:            01600 775100