South Essex Branch News
News from National Office
Life with MND online
A new website about people's experiences of living with MND is due to be launched this month. The site draws on a research study which involved interviews with 35 people with MND and 11 carers around the country. Visitors to the site will be able to see and listen to real people talking about topics such as their immediate reaction to the diagnosis; how they manage daily life; the impact on their family; how they made decisions about equipment, home adaptations
In the last few years the site has grown and gone on to win awards for its outstanding provision of information on a range of health issues, and is intended for patients, families and healthcare professionals as an extra source of information and support, as well as a teaching aid for health professionals. The web address is www.healthtalkonline.org
WILL YOU ?
Have you thought about making a Will ? Leaving a Will is a very important way of securing the future of your family and friends. By leaving the MND Association a legacy (gift) in your Will, it is also a tremendous and thoughtful way of supporting the Association, indeed legacies provide a vital 25% of our annual income. Your valuable gift would be exempt from Inheritance Tax and form a key part of the Association's long-term income, helping the Association to continue providing essential information, support and advice for people living with MND, their families and carers, and continue to search for better treatments and ultimately a cure for MND.
CARERS SPECIAL GRANTS
All local authorities have a special fund that is specifically used to give Carers a break. However, this is interpreted quite differently, depending on where someone lives. The way some local authorities administer the grant is negotiable. Some may provide funding for things like pampering days or leisure activities. A Carers Assessment would be carried out to identify what the needs are.
In some areas the local Carers Centre or Carers Association administer part of the grant on behalf of the local authority, so it may be worth contacting them for information first.
A new package of support for carers was announced earlier in the year for Care Services. The New Deal for Carers will include additional funding for emergency support, a national helpline for carers and an expert carers programme. For further information contact Carers UK or visit www.newdealforcarers.org
CARERS ( some useful items hopefully of help )
If people are unable to attend an optician for a sight test or a dentist for dental problems, a home visit might be offered by the NHS
A Carers' Card can show that you look after a person with MND which might be useful in times of airport chaos, long queues, etc.The Post Office has a travel insurance policy for people with disabilities. Make sure it meets your requirements.If you use a stair lift, an electric bed or a "Possum" you can be put on an At Risk register in case of power failure. Contact your electricity supplier with your account number and postcode.
The You and Yours programme on BBC Radio 4 has launched an interactive tool to give people an idea of how much social care support they are entitled to and how much it will cost. People are also being invited to contribute to the Government's national consultation on the future of social care by completing a questionnaire on the You and Yours website. For info visit www.bbc.co.uk/radio4/youandyours/careintheuk/index.shtml
Carers UK has just produced " Looking after someone- a guide to carers rights and benefits 2007/8" The guide sets what rights carers have and how they can get financial help, practical help, and help combining work and caring. Individual copies can be obtained from the Carers Website.
Carers UK Contact ( England) Email : info@carersuk.org Website www.carersuk.org
Did you know there are pages on the Association's website specifically aimed at carers www.mndassociation.org/carers
BOOKS Two books and one booklet are available which may be of interest. The first is "The Carer's Handbook" which is published by HowtoBooks price £10.99 www.howtobooks.co.uk and covers what carers need to know to do the job; how to find a way through maze of health, local authority and voluntary agencies, guidance on day to day practicalities, financial and employment rights and coping with emergencies. The second is "Motor Neurone Disease - A Family Affair " which is published by Sheldon Press and explores the needs of the whole family as adjustments are made to living with MND. The booklet is entitled ," When caring comes to an End " is easy to read and is a practical guide under three main headings. When the person you care for moves into residential or nursing home . When the person you care for dies, and life after caring. The booklet can be obtained by downloading from Carers UK Website www.carersuk.org
PRESCRIPTIONS
The Association is working to enable everyone with MND to obtain free prescriptions. Some people will automatically be exempt because they are over 60, are claiming income support or receive the maximum award of working families tax credit or disabled persons tax credit. However if someone does not fall into any of these categories they may still be able to obtain an exemption certificate. You can obtain an exemption certificate if you have " a continuing physical disability that prevents you from leaving home without the help of another person" Form FP92A,available from your GP surgeries, has to be signed by the GP to confirm that the person applying qualifies.
RIG / PEG
Following problems experienced by a member of the Mid Kent Branch regarding the insertion of a RIG (Radiological inserted Gastrostomy ), the Medway and Swale MND Clinical group undertook a project to introduce a standardised approach. The Clinical Group met at the Wisdom Hospice and comprised of key professionals gathered from various agencies. Together they agreed on a multi- professional, multi-agency protocol for both RIG and PEG, and as a result and comprehensive booklet has been produced for use by people living with MND and their carers.
In addition and as a result of numerous requests from people affected by MND the association has re-introduced an information sheet for PEG it explains clearly what a PEG ( percutaneous endoscopic gastrostomy ) is, how it is inserted, and the benefits of having one. For further information on either you should contact the Branch via email at sessex@mndassociation.org.
Non-invasive Ventilation Campaign Group
The Association has set up a Campaign Group to take forward work on non-invasive ventilation (NIV). The aim of the Group is to make NIV more widely available to people with MND. The first phase of the work is to gather data on how many people with MND currently use NIV and a questionnaire was included in the Spring / Summer edition of Thumb Print. There has been a good response to the questionnaire with over 200 completed questionnaires and a further 20 through the website. The results are being analyzed and the results used to make NIV more widely available to people with MND.
The All- Party Parliamentary Group on MND has been keen to help with the campaign and will be carrying out its own survey of what respiratory services Primary Care Trusts in England and Local Health Boards in Wales say they provide to people with MND. Once we have a clearer picture of what services are being provided, we can target our influencing activities more effectively.
INFORMATION FOR WHEELCHAIR AND SCOOTER USERS.
Public transport should become more accessible for wheelchair users in the future. New regulations mean that in future all trains, buses and taxis have to be designed to carry wheelchair travellers." Get Wheelchair Wise " is a booklet containing information about how to get the best from public transport. If you prefer to get about under your own steam there is a Highway Code available for Wheelchair and Electric Scooter users. It gives lots of useful information about where and how you can safely drive your vehicle.
To obtain a free copy of either of the above contact BHTA Publications 01732 458868
LOVE AND CARE FOR PETS IN NEED
The Cinnamon Trust is a national charity for elderly and terminally ill people and their much loved pets. It addresses the problems that owners encounter in the daily care of their pets, as well as taking life-time care of bereaved pets. A national network of 8,000 registered volunteers provide service in the community by offering dog walking, grooming, taking a pet to the vets and short term fostering when an owner needs to go into a hospice or hospital. For bereaved pets there is long term fostering or sanctuary. For further information the website is www.cinnamon.org.uk
BEREAVEMENT REGISTER
The Bereavement Register is a service to reduce the amount of direct mail to those who have died, which can be distressing. To register a death visit www.the-bereavement-register.org and the name and address details will be removed from companies databases and mailing files.
WALKING AID
A West Midlands Branch Committee member living with MND recently trialled an innovative new product called MuSmate, which is a walking aid for people with drop-foot. It uses the action of elastic cord to support the lifting of the foot during walking movement. It would be advisable to seek advice from a health professional before purchasing any piece of equipment and for further information you can visit the website www.musmate.co.uk
HIGHWAY CODE
The latest edition of the Highway Code contains 29 more rules including:- New safety code for users of powered wheelchairs and scooters. Rules and regulations about governing these vehicles. Use and speed limit relating to class two and three vehicles. The Official Highway Code is priced at £2.50 details on www.tsoshop.co.uk/highwaycode
BE A CAREFUL INTERNET -USER !
A multitude of information is available at your fingertips on the World Wide Web. The internet can be an excellent source of health- related information. In fact ,seeking health information is the third most common reason people go online. However, it is important to educate yourself and carefully assess the content of Web sites. To evaluate the validity of a health Web site, look for these important characteristics.
The purpose of the Web site
should be clearly stated.
The authors of the material must be identified. Look for the authors' credentials. Is the author a physician, nurse or other health care professional?
The owner of the Web site and the organization with which the author is affiliated should be identified with contact information.
Beware of health Web sites that appear to be trying to sell something.
If the Web site quotes material from another source, the appropriate credit should be given.
The date of publication should be clearly posted. Make sure the information you are reading is current.
The Web site should have a clearly stated privacy and security policy, especially if you are disclosing personal information.
The internet has become a valuable tool to give and receive information. As long as you can balance what you read with the regular consultation of your physician or other medical professional, you can increase your knowledge with both efficiency and confidence.
LINKGROUP
Set up one year ago the Linkgroup is a self-supporting contact group for anyone diagnosed with a slower progressing form of MND (progressive muscular atrophy or primary lateral sclerosis) or have you been living with MND for more than five years. It has well over forty members and there is a monthly newsletter with information, advice, queries, experience and humour, whilst contact occurs between individuals via e-mail and a recently set up private chat room. So if you would like to contact others with a similar disease to your own. e-mail care@mndassociation.org
With the help and support of members of the PMA/PLS email support group new pages have been added to the website to share those useful hints and tips as provided by people living with MND. Visit : www.mndassociation.org/hintsandtips
RADAR - (Royal Association for Disability and Rehabilitation )
The Association is publishing a number of guide books aimed at helping disabled people to lead more independent lives. Amongst these is There and Back a travel guide to non local travel. Holidays in Britain and Ireland and If only I'd known that a year ago a book intended for newly disabled people or those who have acquired another impairment, their families and friends; it covers areas such as home accommodation, aids and equipment, education and employment, discrimination, health and social services, transport, sport and leisure, benefits and personal relationships. These books are all available through their online bookshop at www.radar-shop.org.uk
BLUE BADGE SCHEME - ARRANGEMENT FOR TRAVELING ABROAD
Reciprocal arrangements with a number of European countries means disabled visitors can enjoy the parking concessions of that country by displaying their own Blue Badge. Phone 0870 122 6236 for a copy of the leaflet produced by the " Mobility & Inclusion Unit " which gives details of these concessions. It is also very important that your badge is displayed correctly by using a blue badge holder, these hold both the clock and badge and are available for £1.50 inc. postage. Contact Caroline or Sharon on 0787 645 2381.
BLUE BADGE SCHEME - NEW RULES
New rules have been introduced relating to the Blue Badges parking scheme for disabled drivers and passengers. The biggest change is the introduction of an anti fraud hologram to help prevent forgeries. Also the new badge will include a gender specific serial number to help parking enforcement, and clearer information about the use and abuse scheme directly on the badge. Local authorities are responsible for issuing Blue Badges. Call your local offices and request and application form or log on to www.direct.gov.uk go to the motoring and transport section and download a form.
The Website also has a facility which allows people to find Blue Badge parking bays, Red Route parking bays, petrol stations and public toilets within many of the major towns and cities in the U.K. The parking bays etc. are all identified by icons which if opened gives you the street address, number of bays available and any restrictions. Listings for garages provide information on whether there is a cash machine and any disabled facilities.
RIGHT TO FLY
Under new European law, if you are disabled or have difficulty moving around, you now have improved rights to assistance when you fly to and from Europe. For further information go to www.equalityhumanrights.gov.uk
Accessible Britain
The Motability Car Scheme and Rough Guides have between them produced a guide for ideas on tried and tested days out across the U.K. The guide is user friendly with handy maps to help plan your day out. The guide costs £6.99 (inc. P&P) or free to Blue Badge holders who pay £1.99 for P&P available on line at www.accessibleguide.co.ukl
MOBILISE
MOBILISE is an organisation run by and for disabled people to promote improved access and mobility. During summer months they receive a number of call from people wanting to know how and where they can hire beach and all-terrain wheelchairs. After looking into this they have now produced a list of beach wheelchair schemes from across the U.K. It can be downloaded from www.mobilise.info/Magazine.asp?ItemId=69. or phone 01508 489449
REMAP - Technical Equipment for Disabled People
Remap volunteers design and manufacture, or adapt, equipment for people with disabilities providing it is not available commercially. They receive requests for help from occupational therapists, other healthcare professionals, charities acting for people with disabilities, the individuals and their families and carers. For further information contact their website. www.remap.info
CINEMA FREE !!
The Cinema Exhibitors Association offers free admission to individuals who accompany people living with a disability to the cinema. A national card is required to verify the holder is entitled to one free ticket for a person accompanying them to the cinema. To apply for the card, you need to be in receipt of Disability Living Allowance or Attendance Allowance. The card is valid for three years from date of issue. A processing fee of £5 is chargeable per card and this should be sent with the completed application form. The form is available from website www.ceacard.co.uk
Branch News
Community Transport for Rochford
If you are a permanent resident in the district of Rochford and are unable to access conventional transport due to :- Having restricted mobility or being temporarily unable to access public transport or living in an area not served by public transport or where your transport needs are not met by existing timetables then ring 01268 777434 Mon - Thurs 0915 hrs - 1430 hrs Fri. 0915 hrs - 1200hrs Passengers will be asked to make a contribution of £1.50 for any distance up to 5 miles and for journeys over 5 miles 40p per mile is payable.
Disability Essex Travel Voucher Scheme. Are you a wheelchair user? Phone to see if you are eligible for £25 per month towards your travel - 01245 253400
NO MORE SPILLS
An MS sufferer has inspired a novel design for an unsplillable drinking cup. The "easi2drink" insert, which fits into a ceramic or glass beaker, is based on the idea of using a cluster of narrow tubes within the cup. The insert divides the drinking vessel into separate compartments so that the user can drink confidently without having to worry about spills. For further info. please contact the Branch via. email sessex@mndassociation.org
KEEP WARM KEEP WELL
A guide for people with disabilities or long term health conditions is produced by the Department of Health in association with other partners. The aim is to help maintain good health during the winter and take advantage of financial help and benefits available. For a copy email dh@prolog.uk.com or order at www.orderline.dh.gov.uk and quote 289400
CENTRAL LONDON CONGESTION CHARGE
Disabled drivers holding a disabled badge ( blue or orange ) visiting London can claim 12 months 100% discount from the daily eight pounds congestion charge, by paying a one-off up front fee of ten pounds. A form has to be completed and submitted with a copy of the badge and proof of identity such a birth certificate or driving license
For more details call 0845 900 1234 or visit web site www.cclondon.com
DaRT SCHEME
If you regularly travel in London and make use of DaRT ( Dial-a-ride and Taxicard), which covers five London Boroughs, please be aware that the name has now changed to Transport for All. For more infomation contact Transport for All on 0207 737 2339 or www.disabilitynow.org.uk
DISABILITY ESSEX HELP
Do you require Guidance or Information on any disability issue. Call the ESSEX Disability Helpline 08444 121771 staffed Monday to Friday 1000hrs to 1600 hrs by disabled people who can give guidance and help on any subject appertaining to disability, or you can contact via your computer details below.
Help the Aged is concerned that many elderly people are loath to leave their homes because of the lack of public toilet facilities. It would like to hear about any examples where a toilet has been closed by a local authority because it did not meet 'disabled access' criteria. Please advise Help the Aged 01621 892794 or email as below.
email - info@disabilityessex.org
COMPLEMENTARY THERAPIES
Complementary therapies, including acupuncture, aromatherapy and reflexology have improved the quality of life for many people with MND, but did you know that the Association will fund up to four treatments of a therapy of you choice. If you think you could benefit from this type of treatment please look www.mndassociation.org or contact Sharon Clark on 01702 479219, who can give you more information and help you identify an appropriate practitioner in you area. It is important that you speak to your GP before undertaking any complementary treatment.
IN CASE OF EMERGENCY
Following the disaster in London the East Anglian Ambulance service has launched a national In Case of Emergency (ICE) campaign. The idea seems an excellent one for those people who normally carry a mobile phone. You store the word ICE in the address book and against it the number of the person you would want to be contacted in case of emergency, enabling the police, ambulance or hospital staff to quickly speak to your next of kin.
PALS ( Patient Advice and Liaison Service )
As a patient, relative or carer sometimes you may need to turn to someone for on the spot help, support and advice. PALS can help guide you through the NHS system for further info contact branch via email.
Essex Coalition of Disabled People ( ECDP )
Essex Coalition of Disabled People is a disability rights organisation run by disabled people for disabled people in Essex. It was established in 1995 when a group of local disabled people, committed to following Independent Living principles and the Social model of Disability and aware that no such organisation existed in Essex, formed the Coalition. They are a " cross impairment " based organisation and exist to support ALL disabled people, whatever sort of impairment they may have. This includes people with physical or sensory impairments, learning difficulties, mental health service users / survivors etc. Their website for further details and information is www.ecdp.org.uk
The Branch would like to thank everybody who donated money via. our collecting tins or by any means - it all goes towards helping people with MND and their families.
DONATIONS TO THE BRANCH
Gift Aid £1053.69, Leigh Fruits £14.89, Anne Watts £13.22, Vivienne Storey £1200.00, Island Fabrics £27.50, Church Road Supermarket £4.82, G.Hitchcock £30.00, Knights of St.Columba £75.00, A&P Gambling £278.00, In memory Terry McGregor £595.00, Smith Bros. £65.00, Rev Wells: Mr. & Mrs. Holland £25.00, St.Aidan's Church £100.00, Paul Dain £50.00
TRIBUTE FUND
Beverley Storey £ 85.00
FUNDRAISING
There has been an outstanding amount of money raised by our fabulous fundraisers Paul Goodwin's fishing day generated £1570.00, Alan Halsey with a sponsored bike ride £1340.00. Harry Fether London Marathon his 21st and 3rd for MND £925.00,Curry evening at the Maharaja £1000.00 AND lastly the fantastic amount of £11600.00 raised by the Walk to D'Feet event organized by Sandy. The Branch won top honours at the National AGM for most participants and most money raised and Sandy was presented with a framed photograph, plaque and the shield, where the Branch name was added for the third time. It was a great tribute to Sandy's dedication, hard work and commitment.
GIFT AID
If you are a taxpayer we are able to reclaim the tax that you have paid on any donations since April 2000. Therefore every £10 that we receive is worth £12.82 ,just as long as your donations are made through GIFT AID. If you would like to find out more about GIFT AID please contact Ivor on 01702 547517.
Paying too much for Gas and electricity?
If you are thinking of changing energy supplier why not have a look at the switchandgive web site at www.switchandgive.com
They provide an independent comparison service that will allow you to compare prices and service levels from all the gas and electricity suppliers in the U.K.
By providing your postcode, current user details, and future requirements they will provide you with the best options on how you could save money, gain improved service, or switch to a more environmentally friendly service.
If you do choose to switch supplier online, and enter through the Association logo, a donation of up to £40 will be made to the MND Association. The donation made is the equivalent of 80% of the commission paid by the energy suppliers to switchandgive for securing new customers and will no bearing on costs to you.
EMPTY PRINTER CARTRIDGES
The Branch could raise money if people donated their empty ink cartridges, and old mobile phones. If you can help please contact the Branch at sessex@mndassociation.org for further details.
SELF ASSESSMENT TAX RETURNS
Did you know that it is now possible to donate money to your chosen charity through Self Assessment tax returns. Donations made this way will benefit from tax relief in the same way that donations made through Gift Aid do at present. Your Self Assessment form will have a section where you can nominate a particular charity to receive an amount of any return due to you. Any amounts donated to your chosen charity will then go directly to their bank account.