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Advice to help MND diagnosed employee?

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    Advice to help MND diagnosed employee?

    Hi there,

    I am a manager and one of my team has been diagnosed with MND.

    I have hunted around online for information about help that I/my employer can offer, but I'm really struggling to find anything aimed at employers that want to help staff with MND. Can anyone suggest where I could look so I can help improve things at work? The work is all computer based.

    So far I've been thinking about two categories: personal support and technology.

    Technology like voice to text and eye tracking both seem worth investigating. Any guidance here would be very welcome.

    From a support point of view, I'm really just making it up as I go along, doing my best and hoping it's OK. But it feels inadequate.

    Any help you can offer me would be fantastic. Thank you!

    To begin with I'd say upgraded seat, grab bars to help getting up, wheelchair access and longer meal breaks as it takes ages to eat in the early stages (Bulbar Onset) limb start is slightly different so a diagnosis is essential for major changes. I'd love to have worked for you btw. ๐Ÿ˜๐Ÿค—๐Ÿ‘โœ”๏ธxx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx


      Admin_MND maybe the best people to advise you riverstone. ๐Ÿ‘
      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹


        I'd suggest depends on how her/him finds can manage riverstone .


          riverstone There is a legal aspect to this too and I'm guessing your company has no Occupational Health department, so you also need to get advice from a governing body, union or trade body.

          โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.



            Personally I left my job almost straight away as I wanted to do my own thing in my remaining time on this planet. ๐Ÿ˜‰xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx


              Hello river stone,
              first of all thank you for taking positive steps to help your employee,
              what help they need should largely be governed by what they need,
              I suggest that he/she gets a referral to a secret nhs department called environmental controls. Also called assistive technology team (their GP can do the referral, a referral is needed) they will be able to do an IT assessment of needs and he /she can share with you
              I would also suggest contact access to work , they may be able to help with funding your employee

              thanks again for caring , and good luck

              As long as thereโ€™s golf and beer Iโ€™m happy


              • Very impressed with you and your employer riverstone.

                Contact DWP and request/demand Access to Work. Depending on the size of the employer, the employer may have to contribute a percentage.

                Undertake an assessment baring in mind that MND may progress quickly.


                  Wow! Thank you for so much help so quickly! I will plough through this information and get started. What an amazing community you are! Thanks again and I now know where to come to get straight to the best help and information. Thanks all and my best wishes to you all. You're amazing, supportive people!


                    riverstone Firstly thank you very very much for your very positive and helpful manner. There are two main issues here, one what can you do to help your colleague continue to work and two what does your colleague need.

                    Lets go back to basics. MND is terminal, most have a life expectancy of 18 months to two years if theirs is what is known as classic MND. Most people on this forum are fortunate (???) to have a slow form of MND and some of us have had the disease for many years. But alas some of us can no longer eat normally, talk normally, and have lost the full use of arms or legs or both.

                    Broad brush there are about 100 people diagnosed with MND per week and a similar number die. There are about 5000 people with the disease in the UK.

                    When you are initially diagnosed there is a stage of shock, sadness and fear of the unknown. Once we have become accustomed to that we try to continue our life as normally as we can.

                    Supporting your colleague emotionally and from a caring point of view is very important. However as an employer, and I was one, you must be careful that you donโ€™t do anything that a disgruntled employee can call constructive dismissal or disability discrimination. You are expected to do what is reasonable and that is not necessarily everything that an employee may want.

                    MND is an expensive illness. Depending on the financial resources of your company to offer to buy a scooter, or wheelchair would I am sure be gratefully received. Or the offer to take them to their appointments.

                    Now back to work. Your colleague may want to work for as long as they can. Why? It may be that they want the normality, or, and this is the very big one, โ€˜How will I pay my mortgage or rent, how can I support my family?โ€™ As you can see some very big questions.

                    MND is a very cruel illness, it does not affect your brain and you can be very astute, as many are on this forum, but have a severely crippled body.

                    Dont let it become the big elephant in the room at work. Your colleague will eventually be happy to talk about it and that is a good thing. Personally I had good neighbours who ignored me for months because they didnโ€™t know what to say. And that alas is usual.

                    Thank you once again for your pro active and caring way you want to help your colleague.