The Irish Motor Neurone Disease Association (IMNDA, CHY 8510) is the only organisation of its kind in the country. We are dedicated to working on behalf of people living with MND and their families and carers. Our key services include home visits by our 6 MND nurses, financial assistance towards home help and the supply of specialised equipment on loan. We also fund and promote research into the causes and treatments of MND.
Our aim is:
- To encourage and promote the best methods of care, education, research and treatment for people with Motor Neurone Disease throughout Ireland, contributing to worldwide efforts in research and development of treatment.
- To establish and promote models of good practice in the delivery of specialised services to our patients, their families and carers, setting standards of excellence.
- To communicate information of Motor Neurone Disease and related disorders widely in order to raise awareness in the wider community.
So how can we help you?
Whether you have been diagnosed with MND yourself or you know someone who has been diagnosed with the disease, our information services can make a real difference to how you cope in the weeks and months ahead. MND is a life-changing illness and we are dedicated to making each change as smooth as possible for all those directly or indirectly living with it.
The first step to living positively with MND is information: what support is available, what to expect, how to cope and so on. The more you know, the better you will be able to take control of what is happening to you and the care you receive. That’s why we place so much emphasis on providing as much, or as little, information as you need.
It may be that you simply want someone to talk to. You might be concerned about a particular aspect of the disease and want to know more. You may be worried about the effect on your family. Or you might want to know as much as possible about MND, its causes, progress and treatment.
Whatever you need to know, we will do our best to help you:
MND affects different people in different ways and we never forget that everyone is an individual with unique needs, anxieties and fears.
For many people living with MND, one of the most important sources of help is the MND Nurse Specialist. The nurse specialist has the experience and the knowledge to provide caring, practical, support to people with MND and their families.
What the MND Nurse can do for you
The team at IMNDA have the most up to date knowledge pertaining to the care and management of MND.
The Association works closely with local service providers to ensure you get the best possible care and support at the right time – support that matches our own standards of care.
- Speak with you on the phone or by email offering advice and support.
- Visit you in your own home.
- Listen to you.
- Link you to local services.
- Provide training and support to other health care team members who are involved in your care.
Standards of Care
Access to information when you need it:
- Written and verbal information relating to the disease and how it may affect your life and services
- Details of the support and services of the IMNDA on a continued basis.
Flexible, co-ordinated, professional, support:
- A single point of contact, who can refer you to other services, as appropriate
- Referrals to professionals in a co-ordinated way, so that any difficulties can be addressed promptly
- Regular review of your situation
- Opportunities to take advantage of the support offered by palliative care services.
Opportunities to discuss your needs:
- Required appointments with the MND nurse, to help support you and your carer, both emotionally and practically
- Opportunities to discuss issues that are important to you, whether practical, emotional or spiritual.
These standards of care are vital in ensuring not only that the right services are available at the right time but also that you as an individual are actively involved in any decisions. With several different services likely to be involved at the same time, it is vital that you and your family feel able and confident to work in partnership with the professionals.
As MND progresses, everyday tasks may become more difficult. It could be something as simple as getting out of a chair or heightened problems when you have difficulty communicating.
There is a whole range of equipment, technology and controls that can make a real difference to maintaining your independence and quality of life. Some of the key items are available through our equipment loan service.
These items are made easily available, however, it is important to note, you will need to be assessed and the item must be requested by the appropriate healthcare professional on your Multi-Disciplinary Team (MDT).
e.g. Occupational Therapist, Speech and Language Therapist, Assistive Technology Advisor or Public Health Nurse.
If IMNDA does not have the specialised item you require within its equipment stores and the item cannot be accessed through health or social services, IMNDA may be able to fund the purchase of the required item.
Funding may also be available to help with the costs associated with care in the home and counselling services. Again a request from a health or social care professional is required.
Campaigning on your behalf
Your experiences and those of others living with MND mean that we have first-hand knowledge of the reality of the disease. We use this knowledge to speak out on your behalf and influence decision-makers at local and national level. This ranges from communicating with the HSE and the Social and Voluntary sector in Dail Eireann, to ensuring that you are able to claim the allowances to which you are entitled.
The national IMNDA office produces a newsletter and organises an annual general meeting and monthly support meetings where people affected by MND offer each other emotional and practical support and exchange information. Local fundraising events and activities also take place.