Text size:

• normal
• large

• Life With MND
• MND Connect
• What is MND
• Newly Diagnosed
  • Is MND Inherited
  • Progression of MND
  • How will MND affect my everyday life?
  • Treatments
• Getting support
• For Carers
• Getting More Information
• Local Support
• Experiences of MND
• PMA/PLS
• Benefits and Finance
• Extra Mile Awards

Motor Neurone Disease (MND) may well mean the plans you may have made or the lifestyle you may have led before diagnosis may need to be reviewed and if necessary changed.

Below are some of the most frequently asked questions after diagnosis.

I have a diagnosis of MND, can I still drive, and do I have to inform anyone?

  A diagnosis of MND is not a bar to driving, it is however a legal requirement to inform the DVLA. The DVLA will probably ask for a medical report from your GP, based on this report and any symptoms you may have, they may offer a time-restrictive licence, this will be subject to renewal and be based on your condition and how the disease affects you. There are driver assessment centres across the UK which will be able to offer advice on adaptations to your vehicle to enable you to keep driving for as long as possible.
Your insurance company also needs to be informed. For more information on how this may affect you, and sources of information for the disabled driver, please refer to Inf07 Motoring and MND (119 kb)

I used to have a flu vaccine, can I still have this now I am taking riluzole?

 Yes the flu vaccine will not affect the riluzole.

I still have sexual desires, will my sexual function be impaired by the MND?

  The MND will not affect sexual ability, however as movements become affected you may need to express your love in different ways. Consider talking to a Health Professional or a Sex Therapist for advice on more comfortable positions. Alternatively contact The Outsiders Club, Sex and Disability Helpline on 07074993527. Visit The Outsiders Club website.

Will my intellect be affected by the MND?

  For the majority of people a diagnosis of MND will not be associated with any mental problems. A small proportion of people may experience personality changes known as cognitive change. More About MND (154 kb)

Will I become incontinent?

  Urine incontinence is unlikely to be a direct result of MND. Problems may arise when mobility is restricted and getting to the toilet becomes more difficult. Your Occupational Therapist will be able to offer advice on equipment or alterations to your home, making toilet facilities more accessible. See Everyday Activities (119 kb) and Movement and Mobility (120 kb)

Do special diets help the MND?

  Special diets will not affect the progression of MND. A nutritious diet will help to ensure you are receiving adequate supplies of vitamins and minerals, which will help with energy levels. A referral to a dietician can be most useful; they will sometimes advise a diet which contains more carbohydrates to help prevent too much weight loss. An assessment by a dietician is essential before increasing any part of your diet or taking extra supplements.

What benefits can I claim if I give up work?

  Anyone given a diagnosis of MND can claim for Disability Living Allowance if under 65 years of age, or Attendance Allowance if over 65. These benefits are irrespective of savings or whether you are working or not. Please ring 0800 882200 for a claim form.
Other benefits available if you have to stop working include, sickness benefit, incapacity benefit or income support.
If you would like to remain in work for as long as possible, please ask your local job centre to refer you to the Disability Work Adviser who will help to keep you in the workplace for as long as possible, through Government funding for adaptations to the workplace.
For more details on these benefits and the criteria for applying please see Work Benefits and Finance (142 kb)

Is my partner able to claim for the Carers Allowance if their working hours have to be reduced to care for me?

 Carers allowance is available for people who care for someone over 35 hours per week. The criteria for this allowance is quite complex, if you are earning more than £82 pounds per week you cannot claim for this allowance. If you receive any state benefits such as income support, state pension you may not receive all of this benefit. Please refer to:
Work Benefits and Finance (142 kb)

I have been told I should have a carers' assessment as I regularly care for my partner for over 20 hours per week.

  There may be services your local Social Services can provide that give you short breaks from caring. You will need a carer’s assessment to qualify. See Carers (132 kb)
The Government has produced a leaflet explaining your rights to an assessment:
How to get help in looking after someone

How do I get a Blue Badge?

  You need to contact the Social Services department of your local County Council, for an application form. They will ask for proof of your disability, such as receipt of the higher award for Disability Living Allowance. If you do not receive this benefit or your award is lower, you can still apply, but you may be asked to have a medical examination. You will also need to provide two passport-sized photographs of yourself.

Can I get Travel Insurance?

  Travel Insurance can be difficult to get when you have a diagnosis of MND. There are insurance companies which will insure you. Please refer to our Inf03 Holiday Information (148 kb) for a list of companies.
You will probably be asked a series of questions, these will determine the level of cover they will offer as well as the amount of premium and excess they will apply. No insurance company will offer cover if you awaiting any diagnostic test results. If they ask you if you have been diagnosed with a terminal illness you must make them aware you have received NO prognosis. If you do not they will assume you have been given one and will refuse to insure.

I would like to make an Advance Decision to refuse treatment, which will ensure my wishes are carried out should I be unable to convey them. How can I do this?

  Before considering writing an Advance Decision to Refuse Treatment it would be best to discuss your wishes with your family doctor. The document needs to be witnessed by two people who will not benefit from your will, it would be an advantage if one signatory could be your doctor. A copy needs to be given to your doctor for your medical records.

Do I have to pay for a road fund licence if I have MND.

  You can apply for this exemption if you receive the Higher Mobility Component of Disability Living Allowance. If you do not receive this award you will have to pay the normal rate of road fund licence.

I have several mercury tooth fillings. Will it help to prevent or delay the progression of MND if they were removed?

  There is no evidence to suggest the removal of mercury fillings will help to prevent or delay the progression of MND. There is however some concern that removal may lead to a higher exposure to mercury than if the fillings had been left in place.

Are environmental factors significant in MND?

 Please refer to Research: Causes of MND

I am having trouble accessing the upstairs bathroom. I think a ground floor extension would solve this problem. Is there any funding available to help with this?

  You may be able to get a grant through your local authority. This may take some time so it is best to apply before the need is urgent. It is also essential to apply before you begin any building works. For more information please refer to Movement & Mobility (120 kb) .

Do I have to pay the full amount of VAT on items I need to purchase because of my disability.

  If the item to be purchased is designed specifically for the use of a disabled person, the VAT rate is usually zero. Items that can be used by the disabled and non-disabled alike would not qualify for the zero rate. Please refer to InfR15 VAT relief for people with disabilities.doc (54 kb)

How can environmental controls help me?

  Environmental controls assist people with little movement to control a range of practical operations in the home at the touch of a switch. It is possible to obtain environmental control units through the NHS following an assessment by an Occupational Therapist.

Do I need to register my wheelchair, scooter or carriage with the DVLA?

 Some mobility scooters and carriages have to be registered with the DVLA. The DVLA categorises scooters and carriages in 3 classes. Class 3 carriages need to be registered for road use, be licensed in the disabled taxation class and display a nil duty tax disc. Unlike ordinary cars, carriages do not need to provide evidence of Vehicle Excise Duty (VED)exemption when licensing in the disabled class. They are exempt from paying the first registration fee and are not required to display registration plates.

If you are unsure if your scooter or carriage should be registered visit the DVLA website or contact DVLA on 0870 240 0010.

• Back to top
• Print page
• Send to a friend

• Publications List