YOU ARE DIAGNOSED. DEVASTATING. WHAT NEXT?

All of this information must be checked by yourself. It is only my experience and NOT my recommendation


The 'what next' all depends on what type of MND you have been diagnosed with. If it is full blown ALS which is rapidly progressing you need to be able to sort out help as soon as possible.

If you are not in receipt of benefits then make sure that you apply now. You should be receiving Disability Living Allowance which is not means tested and has no link to salary or any other benefit; nor is it taxed nor should it be put down on a tax return as an income. Make sure that, on diagnosis, you are receiving the Higher Level for both the Mobility component and the Disability component.

The main site link is here; you can then go to your own local authority through this web page.

http://www.direct.gov.uk/en/index.htm

BLUE BADGE - available by applying through your local authority; however, it is easy to claim this if you are already in receipt of DLA (Disability Living Allowance).   If you receive the Higher Rate of Mobility, which you should be, you can automatically get a Blue Badge which is free apart from the cost of passport photos and a stamp.

If you have to have a bathroom with adaptations or other building work for the disabled person you can ask for a reduction in your Council Tax to the next council tax band down. Look on the gov.uk site again.

If you have to give up work you can apply for ESA (Employment support Allowance) which can be up to about £90 but  is subject to tax and will be reduced to about £60 if you are in receipt of a private pension. The Job Centre Plus will send you a form to fill in and may even ask you to go to the centre for an interview (I know, you might think it ridiculous, I had to go) but they can then put you into a 'Support Group' which entitles you to extra money. I started off with £30 but now receive £60 'ish.

If you do have a private pension you can ask for an 'Enhanced Annuity' which means that, valid for a period (mine is for five years), your pension will be greatly increased to take into account the fact that you have a reduced lifespan. Check this out with your pension provider.

Do you have Critical Illness Cover? This will come into play and you will get some income and/or lump sum.

If you are unsure about what you are entitled to check with your local hospice welfare department (no, they are not only for those people at the end of their life and can be extremely helpful and empathetic in many ways)  Go to 'Google' and type in hospice and your area; it will come up with one. Or, you can get referred through your GP.

You will also be entitled to free prescriptions. Ask your GP for a form to complete.

There are Carers Assessments which can be done to see if you qualify for extra benefits.