|
|
|
Breaking (and not so breaking) News! Last updated 27th Aug 2008 |
Use Our Webshop To Help Us Raise Money
We have a new webshop, every time you shop using its link, you'll automatically earn money for us! You don't pay anything extra, so please try to use it whenever you can. Thank you! |
|
RULES FOR DRIVERS WITH MS I have recently been made aware that some of our
more recently diagnosed members have been informed that The
Secretary of State has instructed the DVLA to withdraw all licenses
held by drivers diagnosed with Multiple Sclerosis (MS) and to
replace them with a 1 to 3 year license (as deemed appropriate) as a
matter of course and not to allow those persons deemed medically fit
to retain a full and unrestricted license as was previously the
case. We are all aware that all drivers with MS are obliged by law
to inform the DVLA of their diagnosed condition and that the DVLA
have previously made all necessary investigations to ascertain
whether or not that person should retain a full or restricted
license or indeed have their license withdrawn. |
|
Sue’s Piece DLA Reviews New Care Home
Allowance Insurance The Hot Bath Test |
|
MONEY MATTERS Hope you are all well, I
fell up (yes up) the stairs yesterday (stone cold sober before
you ask!) and tore the ligaments in my left foot – maybe it’s
time for a bungalow! Council Tax
Reduction
'Disabled person' in this
context means a person who is substantially and permanently
disabled. The disabled person can be either an adult or a child
and does not have to be responsible for paying the Council Tax
bill. An extra room does not need to have been specially built,
but your home will not qualify for a reduction unless the
'essential or of major importance' test above is met. Simply
rearranging rooms - for example, having a bedroom on the ground
floor rather than the first floor - is unlikely to make your
home eligible for a reduction. Turn2us Mental Capacity, Planning for the Future Community Legal Advice
The website is currently being tested by the
Shaw Trust, the largest voluntary sector provider of employment
services for disabled people in the UK, to ensure it meets their
Accessible Plus. Plans for the coming year include a pilot of
sign language videos and podcast versions of leaflets. Community
Legal Advice is also developing client-led services through
their national telephone helpline – 0845 345 4 345. This
provides high-quality specialist legal advice on debt, housing,
employment, welfare benefits and education. Moneymadeclear Hope this helps some of you and remember money does matter - claim it if you can! If you need to get in touch for advice or help with anything my e-mail is:- statebenefitsadvisor@mutualsupport.org.uk |
|
Support News BFG Talkback Don't suffer in silence. MS Society’s 2008 research grants
programme
If you have
seen or read any MS news/publications lately and would like to share
it let please me know. Support Team Manager / Membership - Heather - Email: welfaresupport@mutualsupport.org.uk
*Please Note* |
|
|
Your Letters |
|
Electric Wheelchair/Scooter Batteries What I didn’t know was that most wheelchair batteries are generic and that they are simply housed in a manufacturer specific container. Therefore, I opened the outer casing of my powerchair’s battery to find 2 smaller 12 Volt cells complete with model numbers, specifications and a wiring diagram. Entering these details into ‘Google’ returned a selection of companies who could supply the necessary items the best of which seemed to be Power Batteries Ltd (www.powbat.co.uk) who even refund the VAT to eligible buyers. Delivery was charged at £8 which, given the weight of the batteries, seemed reasonable and 2 days later I was mobile again. As with all things electrical, do take care and unless you are confident with electrical items, do seek some professional assistance. Peter Budd |
|
|
Concert / Theatre Tickets / London Eye
Did you know that many
Concert/ Theatre venues do discounts for people who are registered
disabled. You can get either 2 for the price of one, or tickets that
are substantially reduced in price. |
|
Mutual Support The decision to form a group
for those people affected by Multiple Sclerosis, was born of
conversation between myself and my cofounder Sue Smith. At the time
of conception, we had no idea if there were people, in the Services,
other than ourselves, affected by this spiteful condition. We knew,
from the outset, that we had to have a name. We toyed with numerous
acronyms, in an attempt to include the letters RN, RAF, Army and MS.
We spent hours with several, often obscene, combinations.
Eventually, I asked Sue what we were actually trying to achieve, it
was not to set up a fund-raising group, but Sue said we were trying
to, “Offer others a degree of Mutual Support.” Shortly after,
Suzanne Crighton (Ne Reynolds) happened to be co-located with me,
read our draft DCI, became our first real member, and thus the group
was born. We began with less than £200, we have been lucky to obtain grants, donations and other funding to build up the reserves we now have. The Charity Commission frowns on any charity that does not spend its money for the people it purports to represent. There was some discussion at the AGM, regarding those members and feel unable to attend our six monthly meetings due to the cost. A suggestion was made that we levy no fee for future meetings; however, this could cause more problems than it solved. We have to take a step back and ask why members do not attend. Being a Service community, both active and retired, we do not like to ask for assistance, especially when it appears to be a charitable hand out. Mutual Support, by its very nature, is a charity, set up for and by the Armed Forces, because we know better than any civilian can, the ethos that we generate and within which we exist. From the very start, our meetings have had an air of informality, combining information, serious discussions with light hearted banter. Banter that bonds us, in a way that is unique, and is to be celebrated. Whereas, I personally commend the laudable aims of making the meetings accessible to everybody, regardless of individual circumstances, I can see the pride, of the Serviceman, and the apparently high-cost of our meetings is an incongruity that is difficult to overcome. I have given this much thought since the AGM, and tried the impossible, to look at the situation through the eyes of others. This seems to be an impossible situation; however, I decided to try for the sake of for whom the group really exists: the person who does not know that they will become a member. That is a phrase I first used in answering the same question, as put to me by Duncan James. The strength of any group is within its membership. Where we differ is, that when people join the services, they are fit, usually in the prime of life and have often never even heard of Multiple Sclerosis, let alone thought they would ever be members of a group of disabled people. We are, when all is said and done, a charity, within in the service community. As such, we are there to support our membership. If that support is channelled through our meetings, then it is incumbent, upon the committee, working on our behalf, to ensure that these meetings are attended by as large a percentage of our membership as possible. Our meetings should be analogous to Disability Living Allowance, which I first claimed when still a serving Officer. At the time, I must admit that I felt ashamed; I was earning a good salary, and did not really appreciate the meaning of a non means tested benefit. When a Serviceman is chosen to represent, his or her, chosen Arm in, say. A sporting event, he is not expected to pay for the whole event. They’re playing their sports through choice, and think nothing of going off going on a freebie trip. We have no choice, MS chooses us, so why do we not get the perks that sportsmen get? As long as I am able, I would choose to contribute to the costs of these weekends. Even when going through the very public trauma my wife and I did about 6 years ago, we attended, and contributed towards, as many meetings as we could. Had the costs become an issue, I’m sure I could have approached the welfare committee for assistance towards the cost of the meeting. In effect, asked for a non means tested benefit. The committee, the welfare committee and our membership in general, are all striving toward the same aim, to make the transition from servicemen to disabled civilians as seamless and natural as possible. It will never be easy to make the transition from donors to recipients, but we must break the circle. Personally, I do not favour making all meetings completely free; however, there should be no stigma attached to any member who feels the need to approach the welfare committee for assistance towards their attendance. It is a proud boast that very few members have attended only a single meeting, so we must be doing something right. I think the way forward is to make all meetings open to all members, and ask attendees not to pay up front, but to make a contribution of what they think the weekend was worth to them. This could be an anonymous cheque, or even a postal order. The group as a whole treat confidentiality very seriously, and would never divulge names of people who thought the weekend was worth nothing, nor those who thought it worth £1000. To all of us, these weekends are invaluable. Residential weekends must continue. Kim Bartlett |
|
Website Watch Directgov - This site takes you straight through to public services. It is the main Government website. The section for disabled people has information on transport, leisure, financial support, employment and much more. http://www.direct.gov.uk/en/index.htm The
Department of Work and Pensions - This Government
site has benefits and service information for disabled people and
carers. Service Personnel and Veterans Agency (SPVA) - SPVA will be staffed by caring and experienced people, who make it their business to understand and empathise with the serving and veterans community and are committed to delivering a high quality service. http://www.veterans-uk.info/ Citizens Advice Bureau - The CAB offers free, confidential and independent advice from over 3,200 locations. This site has useful factsheets to print off and FAQs on a wide range of subjects. http://www.citizensadvice.org.uk/ The National Debtline - This site offers free, confidential and independent advice on debt problems. It has a helpline, fact sheets and sample letters for problems with debt. http://www.national-uk-debtline.co.ukConsumer Direct - This is clear practical consumer advice from the Government. The site has useful factsheets and a helpline to use to complain about a trader or to speak to a trained consumer adviser. http://www.consumerdirect.gov.uk/Watchdog - The BBC's Watchdog programme on consumer affairs has a site includes plenty of interest and pro forma letters on current issues.http://www.bbc.co.uk/consumer/tv_and_radio/watchdog/ Ricability - Ricability is an independent research institute that produces guides for disabled and older consumers. Currently, on the site, there is a guide to choosing a car. http://www.ricability.org.uk/Disability Rights Commission - The Disability Rights Commission is an independent body established by Act of Parliament to eliminate discrimination against disabled people and promote equality of opportunity. http://www.drc-gb.org/RADAR - RADAR (The Royal Association for Disability and Rehabilitation) campaigns for better lifestyles for disabled people and their families. They cover a wide range of issues and produce factsheets, publications and offer an advice service. http://www.radar.org.uk/radarwebsite/The Department of Transport - The mobility section of the DoT website is a useful source of information on public and private transport. It also covers transport related issues and the legislation. http://www.dft.gov.uk/NHS Direct - NHS Direct is a website full of information on health, medical conditions, treatments with links to other organisations and lists of useful publications. http://www.nhsdirect.nhs.uk/Equality 2025 - An important initiative that will help the life chances of disabled people by ensuring that they will have a direct voice to central government helping to design policies and services that disabled people really want. http://www.equality2025.co.uk/ |
If you are not already a subscriber to 'new Pathways', the Multiple Sclerosis Resource Centre bi monthly magazine, may I suggest you become one. It is always full of interesting and informative articles. The cost for 'new Pathways' is £10 annually. |
|
MS National Support Groups |
|
|
AsianMS c/o Sanjay Shah e mail: sshah@mssociety.org.uk |
GLAMS
- The GLAMS contact details are as follows: |
|
E-Mail your comments, thoughts or letters to your editor |
|
In no way should anything in this newsletter
be considered as offering medical advice. The content on the site
is presented in summary form, is general in nature, and is provided
for informational purposes only. |
|
Please Note. Views printed in this website are NOT necessarily those of the Editor or the Mutual Support Committee. |