NEWS IN BRIEF
ACCESS ALL AREAS... ACCESS ALL AREAS... ACCESS…
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Around half of Britain's stations aren't yet accessible, but that does not mean you can’t travel from your local station. By calling in advance, the rail network will provide a taxi which will takeyou to your nearest accessible station and you can continue your journey from there. This is not a door-to-door service, but will pick you up from your station to station. Station accessibility is continually being improved under the auspices of the Department for Transport's Railways for All initiative. The rail networks currently receive 400,000 advanced assistance bookings per year. You are advised to book 24 hours in advance. This is not to say you can't just turn up and travel. Advanced warning allows time for staff to prepare for your requirements. If you just turn up, help is likely to take longer to organise, especially at smaller stations.
Once you've got on the train itself, there are various measures in place to make your journey more enjoyable and these facilities have improvedconsiderably over recent years. Slam door trains have been a thing of the past for two years and all rolling stock now has accessible toilets and assigned wheelchair spaces, as well as priority seating for disabled people, with longer legroom. Where there is a buffet service, members of staff will be willing to help you by visiting the buffet car on your behalf, although many trains have trolley service as well.
This is all "If and good", but you still have the cost of the train fare to deal with. The good news is that anyone who receives the Higher Rate Mobility Component of Disability Living Allowance, or lower rate for mobility, qualifies for the Disabled Persons Railcard. People receiving the War Pensioners' Mobility Supplement also qualify. Production of this card gives you a third off all rail travel and a companion will receive the same discount. (You can also receive 25 per cent discount at any Holiday Inn on production of the card). The card costs £18 for one year or £46 for three years - a sum which you can easily make back on just one or two journeys. So if you fancy rediscovering the joy of rail travel there's really very little to stop you. Just ask Simon Minty, who has restricted growth and is now a fan of the railways. 'After years of driving everywhere, I recently applied for a Disabled Person's Railcard and am rapidly becoming a convert to train travel. Once the ticket and assistance has been booked, I turn up at the station, get my scooter on the train and then rest, read, eat a little, listen to my iPod and gaze out of the window. Trips from London to Newcastle and Leeds have been a breeze.'
Contact details
If you want to find out more about accessible rail travel or need the assistance helpline number for your local railway network, contact National Rail Enquiries at oron 08457 48 49 50.
For more information on theDisabled Person's Railcard see or call 0845 605 0525.
"BY CALLING IN ADVANCE, THE RAIL NETWORK WILL PROVIDE A TAXI THAT WILL TAKE YOU TO YOUR NEAREST ACCESSIBLE STATION"
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Motability Online and Other Useful Websites
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The web contains amazing amounts of information on every subject. There are some fantastic sites out there to helpdisabled people, their families or friends.
DirectGov
This the website of the UK Government, aimed of providing information on public services all in one place. It has an extensive section for disabled people, covering a wide range of subjects including employment support, housing, education, transport and your rights.
Department for Transport
The Department for Transport has the responsibility for making sure that the transport infrastructure in the UK works for everyone who needs to use it.
For people with disabilities there are more specific requirements and these are dealt with on a dedicated section of this site which you can explore fully at —
Department for Work and Pensions
The Department for Work and Pensions exists to promote opportunity andindependence for all, to help individuals achieve their potential through employment and to end poverty in all its forms. As such it has a big responsibility for people with disabilities and this is reflected in the nature of content on this site.
Direct Enquiries
Provides the Nationwide Access Register enabling organisations to communicate their accessibility to anyone with specific requirements. The register includesaccess information on restaurants, retail outlets, hotels, transport and over 4,500 Motability dealerships.
Equality and Human Rights Commission
The Equality and Human Rights Commission is an amalgamation of the Commission for Racial Equality, Equal Opportunities Commission and, more appropriately here, the Disability Rights Commission. You will find lots of vital information on your rights and where to find help and support if you feel they are being violated.
Radar
This disability network has a vision – of"enabling disabled people and disability organisations to initiate, develop and encourage change and campaign for a fully inclusive society." RADAR runs events and campaigns to further this aim and you can find out more about them on the site.
Ricability
This independent research charity produces practical, independent reports for older and disabled people. Ricability, is responsible for carrying out the car measurements that appear on the Motability Searchable Price Guide, but it covers a much wider variety of topics, such as household products and Telecommunications.
Forum of Mobility Centres
The Forum is a network of independent organisations that offer a high level of advice and information through 17 Mobility Centres located throughout the UK. The centres provide advice to people who wish to begin or return to driving following an illness, injury or accident. They also offer guidance about getting in and out of a car or loading and transporting a wheelchair or a scooter.
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ENTEROVIRUS INFECTION OF THE STOMACH
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In September, the Journal of Clinical Pathology published a study by John Kai-sheng Chia and Andrew Chia, of Enterovirus Medical Research, USA, which had found enteroviral particles in stomach biopsies of 82% of 165 M.E. patients who had chronic abdominal complaints.
An enterovirus is a virus that enters the body through the gastrointestinal tract, multiplies and may invade the central nervous system.
The results of the study were widely reported in mainstream media, under headlines which implied that a stomach virus could cause M.E.
Although finding a chronic infection of the stomach may not directly prove a similar infection of the brain, muscle or heart, it may open up a new direction in research for the illness.
The Chia family have personal experience of M.E. Andrew Chia, 24, was diagnosed with chronic fatigue syndrome in 1997. His father, John, is an infectious disease specialist in private practice in Torrance, California.
In the abstract of their article, the Chias concluded: "A significant subset of CFS patients may have a chronic, disseminated, non-cytolytic form of enteroviral infection, which could be diagnosed by stomach biopsies."
Their findings were presented in part at the international IACFS conference held in Florida in January 2007. The full text of the article is available at Jonathan R Kerr, St George's University of London, commented on the Chias' study in an article also due to be published in the ( – see Online First 14 September 2007, doi: 10.1136/jcp.2007.051342).
Dr Kerr said the study results "Strongly suggest a new and hitherto unrecognised disease mechanism in CFS/M.E. patients, which in my opinion, could trigger and perpetuate this disease... But, as with all discoveries, many new questions are raised." Nevertheless, he feels that John and Andrew Chia are to be congratulated on "a highly original and thorough study which is immensely valuable to the field. We must now determine how this fits in with what is already known of the pathogenesis of this elusive disease."
With thanks to InterAction for article and cartoon
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Benefit & Work Guides: We are now a member of benefitsandwork.co.uk, who do a lot of guides on claiming benefits. We can now send these guides to our members, free of charge, via email attachment or post. You need Adobe Acrobat reader to read the email version (free to download). If you would like copies in the post, please phone Caroline on 01204 525 955 or email th your name, address and guides you want. Some guides are quite large, so emailing them where possible would save us costs, but we are more than happy to post them out to you. The guides we have are:
Incapacity Benefit:
Incapacity claims on mental health grounds: a guide to the personal capability assessment (44 pages).
Incapacity claims on physical health grounds: a guide to the personal capability assessment (44 pages).
Incapacity for work appeals: a guide to challenging a Personal Capability Assessment (25 pages).
60 questions you're likely to be asked at your incapacity medical (3 pages).
Exempt but sent a questionnaire? (6 pages).
Claiming Disability Living Allowance and Attendance Allowance:
Disability Living Allowance Claims for Adults on Physical Health Grounds (63 pages, April 2007).
Disability Living Allowance Claims for Adults on Mental Health Grounds (54 pages).
Disability Living Allowance Claims for Children on Physical Health Grounds (52 pages).
Disability Living Allowance Claims for Children on Mental Health Grounds (58 pages).
Attendance Allowance on Physical Grounds (37 pages).
Giving persuasive information about how far you can walk (12 pages).
70 questions you're likely to be asked at your DLA medical (4 pages).
Challenging the claim a bottle or commode will replace the need for help (7 pages).
Disability Living Allowance and Attendance Allowance appeals.
Appealing against a Disability Living Allowance decision (14 pages).
Support for clients with DLA & AA appeals (37 pages).
Ways to challenge DLA or AA medical reports (27 pages).
Other DLA issues:
Disability Living Allowance renewal claims (6 pages).
Changes of circumstances for people claiming DLA (8 pages).
Work and Benefits:
Work and benefits for people with long-term health conditions (6 pages).
Permitted Work (6 pages).
Getting the best from work-focused interviews (11 pages).
If I do any work, can I continue to claim my . . . (4 pages)
Caution! It may not count as voluntary work (5 pages).
General Guides:
Getting help with your benefits (13 pages).
Which benefits can I claim? (8 pages).
Get better treatment from the DWP (12 pages).
Disability discrimination:
Am I covered by the Disability Discrimination Act? Employees and Jobseekers (9 pages).
Reasonable adjustments for jobseekers and employees. Employees and Jobseekers (8 pages).
UK doctors have received a letter from the manufacturer (Cephalon)
of Modafinil/Provigil warning about the need to be aware of two serious side-effects that have recently been identified.
a.. SERIOUS SKIN RASHES requiring hospitalisation and discontinuation of treatment have been reported in adults and children in association with use of modafinil within one to five weeks of initiation of treatment. Modafinil should be discontinued at the first sign of a rash and not restarted.
a.. PSYCHIATRIC ADVERSE EVENTS including psychosis, mania, delusions, hallucinations, suicidal ideas and aggression have also been reported. If psychiatric symptoms occur, modafinil should be discontinued and not restarted. Caution should be exercised in administering modafinil to patients with a history of psychosis, depression or mania .Modafinil is not approved for use in children for any indication.
MODAFINIL IN RELATION TO ME/CFS:
Modafinil is a drug that is currently being used in the symptomatic relief of excessive sleepiness associated with narcolepsy, obstructive sleep apnoea/hypoapnoea syndrome and moderate to severe shift work sleep disorder in adult patients.
Modafinil has also been assessed as a possible form of treatment for ME/CFS and two papers have been published in relation to this (Turkington et al 2004; Randall et al 2005). Given this new information it would not be sensible for people with ME/CFS to take part in clinical trials if they have a history of drug induced skin rashes or psychiatric illness.
For further information on the use of modafinil in ME/CFS see section 7:3 of 'ME/CFS/PVFS - An Exploration of the Key Clinical Issues' (MEA publication: 2007)
Thanks to the CFS/ME Rotherham group
NEWS FLASH – Travel Vouchers
Just thought I would let everyone know how helpful I have found the travel vouchers. I read about them in the last newsletter and realised how helpful they would be for me. Sometimes I can drive locally but at the moment am not well enough. Applying for the vouchers was a doddle and they came quite quickly. I would recommend them very highly.
Sue Forshaw
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