Where can I find the information I need?
If you have recently been diagnosed with MND or Kennedy’s disease, this page can guide you to appropriate resources to help you access suitable support. Select from the following to find out more.
"Having the information to gain the resources you may need is invaluable and could save time, money, distress and confusion." Person affected by MND
Our support
The MND Association supports anyone living with or affected by MND or Kennedy's disease, in England, Wales and Northern Ireland.
Our information
We provide a wide range of information resources. You are unlikely to have exactly the same symptoms in the same order as someone else, so you don't have to read everything at once. Select from the following to find out more.
Introductory information
Our information flyer gives a basic overview of the range of information we produce for people living with and affected by MND, or Kennedy’s disease.
Our short booklet An introduction to motor neurone disease provides a simple overview of MND and the support available. This is an ideal place to start and an audio version is also available. We also provide a short animation about the disease which you can find on our What is MND? page.
We also provide information sheet 2B - Kennedy's disease.
When you feel ready, you can find more detail in our comprehensive Living with motor neurone disease guide.
We provide other resources and a wide range of information sheets to help with specific symptoms and needs. To order any of our publications, contact our MND Connect helpline, you can also download many resources from our website, see below.
Detailed information and resources
All our information resources and publications list
www.mndassociation.org/publications
Our guides, information sheets, forms and resources for people living with or affected by MND
www.mndassociation.org/careinfo
Information in other languages
www.mndassociation.org/languages
Information for carers
www.mndassociation.org/carers
Information for children and young people
www.mndassociation.org/ypinfo
Information for health and social care professionals
www.mndassociation.org/professionals
Our information about MND research
www.mndassociation.org/research
Online forum and social media
Online forum for people with or affected by MND
http://forum.mndassociation.org
Facebook
www.facebook.com/mndassociation
Twitter
www.twitter.com/mndassoc
Our services
We provide a number of services to support people living with and affected by MND or Kennedy's disease. Select from the following to find out more.
“When I was diagnosed, I had no knowledge of MND. A friend gave me your number. It was the most important call of my life.” Person with MND
MND Connect helpline
MND Connect provides information and support for those with or affected by MND and Kennedy's disease. This includes support for carers and health and social care professionals. The team can also direct you to our own and other services. If you speak little or no English and don’t have anyone to speak on your behalf, we can arrange for an interpreter to join your call.
Telephone: 0808 802 6262 (Freephone)
Email: mndconnect@mndassociation.org
Website: www.mndassociation.org/mndconnect
Our services
If you are living with or affected by MND, or Kennedy's disease, our services can support you. These include our Communication Aids Service, our MND care centres and networks and our Benefits Advice Service. See our services for more information.
If you are looking for support locally, see our local support page.
Membership with the MND Association
Membership is free for people with MND, or Kennedy's disease, their carers and partners. A variety of benefits are available including Thumb Print, our quarterly magazine. See our page to become a member.
Further support
There are many other organisations and services that provide support and information. Select from the following to find out more.
NICE Guideline on MND
The National Institute for Health and Care Excellence (NICE) guideline on motor neurone disease sets out recommendations for health and social care professionals, about the treatment and care of people with MND. Using this guideline may help you achieve a better standard of care and provide supporting evidence if you need to make a complaint.
Webpage: www.mndassociation.org/mycare
For more information on the guideline, see information sheet 1A - About the NICE guideline on motor neurone disease and for information on how to use the guideline, see What you should expect from your care
Always ask if you need any kind of health and social care information at a relevant appointment. If you are disabled, you may require this information in a particular format, such as Braille or easy-read. It is now compulsory in England for health and social care services to provide a format you can access. For more details, search for accessible information standard at: www.england.nhs.uk
Healthcare
The complexity of conditions like MND and Kennedy's disease means a range of health and social care professionals may be involved in your care. If you need to see a specialist, such as a speech and language therapist or neurologist, ask your GP or another member of the health and social care team for a referral. You can also ask them for referrals to a palliative care team, if this is something you require. The co-ordinator or point of contact at MND care centres, networks or other neurological services can also help make arrangements.
Find general information about healthcare services at:
England: www.nhs.uk
Wales: www.nhsdirect.wales.nhs.uk
Northern Ireland: www.hscni.net
Social care
Find out if you are eligible for care services, equipment, emergency care support or carer support by having your needs assessed by adult social care services. Ask for a needs assessment if you have any problems with disability. If you provide support, ask for a carer’s assessment. Contact your local authority for arrangements in England and Wales, or your local health and social care trust in Northern Ireland.
Search for needs assessment or carer’s assessment at:
England and Wales: www.gov.uk
Northern Ireland: www.nidirect.gov.uk
For more information about social care see information sheet 10F – Your rights to social care
Find our information sheets about social care at:
www.mndassociation.org/careinfo
Benefits, finance and work
If you are disabled, have a long-term illness or provide support as a carer, there are a range of benefits, entitlements, grants and financial support you may be qualified to claim.
Find information about benefits, financial support and work at:
England and Wales: www.gov.uk
Northern Ireland: www.nidirect.gov.uk
For more information, see information sheet 10A - Benefits and entitlements
Find our information sheets about benefits, social care and work with MND at:
www.mndassociation.org/careinfo
Low cost apps
There are a number of apps relevant to life with MND, or Kennedy's disease, for phones, computers or tablet devices. We provide a list at:
www.mndassociation.org/apps
Useful organisations
There are many organisations out there that provide further information on a wide range of subjects that may be useful to you. We provide a list of some useful organisations on our website:
www.mndassociation.org/usefulorgs