Publications for people affected by MND

Information for download

• »Living with motor neurone disease (1188kb)

  This provides an overview of the disease and how to manage its impact, to help people with MND achieve the best possible quality of life from diagnosis onwards. When printed or ordered as a physical item, it provides write-on pages to keep track of important records. To obtain a physical copy of the booklet, with additional items, see the order details above. (Code: LW002)

• »End of Life Decisions (651kb)

  A booklet with guidance on end of life planning (Code: ZZ001)

• »Advance Decision to Refuse Treatment (ADRT) pack (352kb)

  This pack includes the ADRT information sheet (also available separately as information sheet 19) with the printable proforma. (Code: ZZ002)

• »So what is MND anyway? (149kb)

  A guide about MND for young people and young carers. (Code: YP002)

• »Information sheet 01 - Clothing (169kb)

  Guidance on clothing and getting dressed (Code: IF001)

• »Information sheet 02 - Kennedy's Disease (133kb)

  An explanation of Kennedy's Disease (Code: IF002)

• »Information sheet 03 - Holiday information (188kb)

  Guidance on what to consider when booking a holiday or accommodation (Code: IF003)

• »Information sheet 07 - Motoring and MND (171kb)

  An explanation of what is required if you have been diagnosed with MND and you drive, with details of any concessions available, such as Blue Badge. (Code: IF007)

• »Information sheet 08 - Choosing the right vehicle (180kb)

  How to select an appropriate vehicle to meet your needs with MND. (Code: IF008)

• »Information sheet 09 - Riluzole (148kb)

  Guidance on riluzole, which is the only drug licensed for treating MND. (Code: IF009)

• »Information sheet 11 - PEG feeding: making the decision (221kb)

  An explanation of tube feeding and the options available. (Code: IF011)

• »Information sheet 12 - Oral hygiene (151kb)

  Advice on how to maintain oral hygiene with MND. (Code: IF012)

• »Information sheet 13 - Complementary therapies (160kb)

  Information about complementary therapies and the options available. (Code: IF013)

• »Information sheet 14A - How motor neurone disease (MND) might affect breathing (186kb)

  An explanation of how MND may affect breathing for some people. (Code: IF014A)

• »Information sheet 14B - Ventilation in motor neurone disease (MND) (158kb)

  Advice on the types of ventilation available to help breathing. (Code: IF014B)

• »Information Sheet 14C - NICE clinical guidelines for non-invasive ventilation (NIV) (142kb)

  A summary of the guidelines for NIV and MND by the National Institute for Health and Clinical Excellence. (Code: IF014C)

• »Information sheet 14D - Troubleshooting for non-invasive ventilation (NIV) (165kb)

  Helpful information on some of the issues that might occur with NIV and the potential solutions. (Code: IF014D)

• »Information sheet 14E - Air Travel and non-invasive ventilation (NIV) (155kb)

  Guidance on what to consider if you are planning to use air travel and wish to take NIV equipment on the journey. (Code: IF014E)

• »Information Sheet 15 - Primary Lateral Sclerosis (170kb)

  An explanation of the type of MND called Primary Lateral Sclerosis (PLS). (Code: IF015)

• »Information Sheet 16 - MND Care Centre Programme (163kb)

  An outline of the services provided by MND Care Centres, as part-funded by the MND Association. (Code: IF016)

• »Information Sheet 17 - Progressive Muscular Atrophy (177kb)

  An explanation of the type of MND called Progressive Muscular Atrophy (PMA). (Code: IF017)

• »Information Sheet 18 - Understanding and coping with bereavement (149kb)

  Advice on where to find support during bereavement. (Code: IF018)

• »Information Sheet 19 - Advance Decision to Refuse Treatment ADRT (158kb)

  Guidance on how to make an Advance Decision to Refuse Treatment (ADRT). This sheet also forms part of the ADRT pack. (Code: IF019)

• »Information sheet 20A - Sex and relationships for people living with MND (189kb)

  Information in response to concerns people may have about sexual expression and intimacy when living with MND. (Code: IF020A)

• »Information sheet 20B - Sex and relationships for partners of people living with MND (188kb)

  Information in response to concerns people may have about sexual expression and intimacy as a partner of someone living with MND. (Code: IF020B)

• »Information sheet 21 - Physiotherapy for people with MND (161kb)

  Advice on how physiotherapy can help maintain flexibility and muscles not yet affected by MND. (Code: IF021)

• »Information sheet 22A - Benefits and entitlements (278kb)

  Advice on the types of benefit and entitlement available, and whether you are likely to qualify, with guidance on how to apply. (Code: IF022A)

• »Information sheet 22B - Direct payments and personalisation (190kb)

  Information about how direct payments work and what personalisation means with regard to social services and care. (Code: IF022B)

• »Information sheet 22C - Disabled Facilities Grants and housing issues (249kb)

  Guidance on how and when to apply for a Disabled Facilities Grant (DFG) and other benefits regarding housing. (Code: IF022C)

• »Information sheet 22D - NHS Continuing Healthcare (215kb)

  Details about NHS Continuing Healthcare and how to apply. (Code: IF022D)

• »Information sheet 22E - Work and MND (226kb)

  Guidance on the options available if you are working when diagnosed with MND, or close to someone who has been diagnosed. (Code: IF022E)

• »Information Sheet 23 - Cognitive Impairment in motor neurone disease (MND): information for carers (150kb)

  Information to help carers who may be concerned about cognitive changes in MND (Code: IF023)

• »Information Sheet 24 - Communicating about MND to children and young people (182kb)

  Guidance on how to help children and young people understand what is happening when someone close is diagnosed with motor neurone disease. (Code: IF024)

• »Information Sheet 25 - Travel and transport considerations (175kb)

  Suggestions on appropriate travel and transport for people living with MND and where to find further information. (Code: IF025)