Issue Two | May 2007
…because life needn't stop when you're paralysed
E-clips is our new bi-monthly email bulletin from SIA. Through this publication we hope to keep you up to date with all the events and fundraising activities taking place with SIA as well as give you an insight as to what you can expect when you join our organisation.
We received some very favourable comments following the circulation of our inaugural issue, and hope you enjoy Issue 2 just as much.
SIA is here to support SCI people and their families from the moment their injury occurs and for the rest of their lives. We offer support and advice to all.
Anyone can have access to our core services such as our Peer Support service and our Advice Line. However, SIA members also receive regular copies of our excellent magazine, FORWARD so why not join to start receiving your copy today.
As a charity we depend on public donations, corporate sponsorship and trust grants, together with a small amount of statutory funding. Anything you are able to donate will help us to continue providing much needed services for SCI people.
SIA is pleased to announce the launch of its new interactive website, including our new online shop. The website, launched on 10th April, contains updated information on all SIA's services and fundraising activities, with the new online shop giving site users the opportunity to buy publications, join SIA and make donations.
If you haven't already visited the new site, click here to take a look
Back to topGot a question? Need some advice? That's what our Advice Line is here for! As well as being available by phone between 9.30 and 4.30 (closed from 1-2), we're now available via the SIA website. We'll aim to answer your query as quickly as possible, so why not give it a try?
Click here to send your query directly to our Advice Line team.
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Pain Management Our Health Information Officer, Yvonne Kinyua, has recently produced a Pain Management factsheet
- the fifth in our ˜Help Yourself to Health' series of factsheets.
Click here to download your copy.
New Factsheet Yvonne is writing up a new factsheet on Ventilator Dependent SCI people and would much appreciate you contacting her if you are ventilator dependent and willing to pass on tips/advice for fellow ventilated people. Yvonne would also like to hear from you with information about other useful resources in this regard, such as support groups and useful websites. If you think you can help then please either email her directly orr call the Freephone Advice Line on 0800 980 0501.
Online Discussion SIA will also be hosting its first online health discussion forum on 22nd May at 6.00pm, where the topic under discussion will be Pain Management. We will be joined by Dr Jan Gawronski, locum Consultant from the Stanmore SCI Centre, so if you have a question you would like to ask about pain management please visit the Chatroom on 22nd May and join the debate. See our Latest News page for details
Tough as nails, soft as silk: The fabric that won’t jerk your skin about A recent trip to the Naidex exhibition at the NEC Birmingham brought this revolutionary product to our attention. Parafricta fabric has been hailed as a futuristic material and has been featured recently in the media as a novel idea for managing Epidermolysis Bullosa (click here to see the article). Its exceptionality lies in its ability to prevent ‘stiction’, the jerking or snatching of skin when in contact with other surfaces. This will greatly benefit SCI people who have compromised skin and wage a continuing battle with prevention of pressure ulcers. Visit the Parafricta website for more information.
If you would like to speak to Yvonne on any health-related matter you can email her or call her on 0800 980 0501
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Once again, this year's Flora London Marathon was a huge success for many charities up and down the country, including SIA. We should like to take this opportunity to say a big thank you to everyone who ran, sponsored or got involved on our behalf, not least our Fundraising Events Manager, Jenny Papple, who participated in the race and completed the course.
Well done to Jen and to all our other runners!
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Time is running out for all those who have not yet purchased their SIA National Raffle tickets. With some fantastic prizes on offer, including the top prize of a Martin Conquest ride-from-a-wheelchair motorbike,
you'd be mad to miss out!!
The raffle will be drawn at the Mobility Roadshow on July 21st, so get your tickets now.
Click here to purchase your tickets online.
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SIA is pleased to announce it has been chosen as the official Charity for the Flora London Marathon 2008. We are very excited to be the selected charity for this prestigious event, and are now accepting registrations for places in next
year's event.
So if you, or someone you know, would like to take part on behalf of Team SIA
now's your chance to get involved!
Click here for further details.
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Our library collection is growing weekly and covers a wide range of topics relating to spinal cord injury. Our latest additions include:
If you would like to visit the library please see our website for opening times or contact our Librarian Debbie Schofield to book a visiting appointment.
Back to topSIA is launching a programme of training on spinal cord injury (SIA Plus) and requires a Training Officer to develop this new area of work. The postholder will be required to construct and deliver high quality training to non SCI-specialists working in general hospitals, as well as those working as community healthcare staff.
Essential requirements are experience of public speaking, ability to engage with people from a range of professional backgrounds, a keen and well developed understanding of the needs of spinal cord injured people, and personal experience of spinal cord injury. The postholder will also need to be able to produce training and promotional materials for the courses, be willing to travel extensively in order to deliver training, and to recruit and train a group of volunteers who will assist in the work.
This is a full time post (35 hours per week) with a salary of £24,477 per annum. Closing date for applications - 11th June 2007. Visit the Vacancies section of the SIA website to download a Job Information pack or call 0845 678 6633
Back to topThere are a number of upcoming events being organised by the Spinal Unit Recreation Fund (SURF) at Pinderfields, who raise funds to organise patient outings and also to purchase equipment. A full list of events can be found on the Pinderfields page of the Peer Support section of the SIA website.
SIA's Peer Support Officer for Pinderfields, Peter Hanley, will be staffing an SIA stand at the forthcoming 'In a Split Second' art exhibition on Friday 18 May as part of SIA Awareness Week activities. The exhibition, which starts on 14 May, takes place at the Round Foundry Media Centre in Leeds and aims to create awareness of paralysis through art. For more information about the exhibition visit the Art & Paralysis website.
Back to topWe are currently expanding our Peer Support team at Salisbury and are looking for new volunteers to join us. If you would be interested to get involved, are able to spare seven hours a week, and live within a 25 mile radius of the Salisbury Centre then we'd like to hear from you. For more information email Bernie Murphy or call her on 0845 678 6633
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If you live in Wales or in the North East, SIA's Public Affairs Team is organising a free regional debate for you: a day of presentations, open forum and workshops, an opportunity for you to discuss your concerns, experiences and suggestions.
So, put the dates in your diary now and look out for your invite in the mail soon. For more information on SIA's campaigning activities, visit the Campaigning section of the new site.
Visit the Dylan Thomas Centre and the Pioneering Care Centre for details of their facilities.
Back to topThis year's AGM takes place on 29 September at the National Centre for Deafblindness, Peterborough. The afternoon session will be a Campaigning for Change debate, during which members will have the opportunity to discuss issues related to the preservation of specialist services at SCI Centres.
A full programme for the day is available on the website, and we look forward to welcoming as many members as possible. Contact Bernie Murphy at the SIA office to register your attendance.
Back to topThe Dept. for Transport have published a consultation paper seeking views on proposals for the enforcement of EU Regulation 1107/2006 - Access to Air Travel for Disabled Persons and Persons of Reduced Mobility when travelling by Air. Further details can be found by visiting their website from this link The consultation closes on 25 June 2007
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Local authorities and disability organisations have been invited to comment on proposed changes to the regulations governing the Blue Badge Scheme and accompanying revised Local Authority guidance. A set of questions and response form have been produced and can viewed by visiting the
Department for Transport
website
The closing date for the consultation is 19 June 2007. If, after reading the document, you have any comments or observations that you would like SIA to include in our response please send them to the Public Affairs team at cfc@spinal.co.uk.
Back to topSince 1997, the European Disability Forum has been working to promote the rights of some 50 million disabled people living in the European Union. Although important steps have been taken towards the social inclusion of disabled people, there are still many issues to be resolved, such as equal treatment in employment, access to education and information, access to transport, and standards to secure accessible products and services.
In 2007, European Year Of Equal Opportunities For All, EDF is running a 1 million signatures campaign in an attempt to achieve a stronger and more effective European disability legislation. The Spinal Injuries Association is committed to actively contributing to this campaign and we hope to mobilise our members, their families and friends (within Europe) to take up the 1 million signature challenge. Please take a few minutes of your time to sign the online form, by going to www.1million4disability.eu.
The collection of signatures will run until 30 September 2007. The signatures will be handed out on 4 October, 2007 to the President of the European Commission, the President of the European Parliament and the Portuguese Presidency. We strongly count on your support to make this campaign a complete success. Let us act together to achieve better living conditions for all people with disabilities in Europe.
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Rolli Company has at last launched its Online Shop in English. Go to the
Rolli Clothing
website to view their new Spring/Summer collection. Cool outfits for ladies - smart ideas for men!
The SIA Governing Council (GC) is composed of spinal cord injured people and meets four times a year to set policy, help develop plans and objectives, as well as monitoring the effectiveness of the organisation. Each year, one third of the current GC is required to retire, but may offer themselves for re-election.
We are also looking for new nominations from amongst the full membership (i.e. those who are spinal cord injured) for fresh ideas and experiences. If you would like to put yourself forward for election to the Governing Council, then why not download a Nomination form, fill it in and return it to the SIA office along with a 'thumbnail' sketch (200 words) about yourself, your interests, skills and experiences. Closing date for nominations is 31st July 2007.
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Former tetraplegic Advice Line volunteer, Vivienne Davies, popped in to see us recently with her gorgeous bundle of joy, baby Flynn, who was born last November.
We thought you'd like to see this lovely picture of them both!
We're considering an idea put to us to set up a home-based audio typing service for a large legal firm. The idea would be that, working from your home computer, you can access a database of work that needs to be typed and submitted. All you would need is a computer, a Broadband connection and (for high lesion tetras) voice activated software. Payment would be at the commercial
'going rate' per hour and the work can be fitted around your other commitments.
If you're spinal cord injured, and would be interested in undertaking this type of work, please let us know (without any commitment on your part) by contacting our Workwise Adviser, John Leonard, at the SIA Office on 0845 6786633 ext 216.
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Workwise Survey
We’d like to send our thanks and appreciation to Shoosmiths Solicitors for their support in sponsoring our employment survey. The results, which you can find in the last (April) issue of FORWARD, proved extremely interesting, so do check them out.
The next issue of e-clips will be circulated in July. If you missed out on Issue 1 you can download it from here. If have any comments or feedback about e-clips, please email our Web Panel who are happy to receive your correspondence. If you have enjoyed reading e-clips why not send it to a friend so that they can register to receive their own copy.
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Wish to contact us regarding e-clips? Email the team at webpanel@spinal.co.uk or phone 0845 678 6633.