Understanding My Needs

1. We welcome your views on our Understanding My Needs form

Understanding My Needs is designed to help people with MND record their individual needs and preferences. The completed form helps guide care workers in the person's home, or staff during admissions to a hospital or hospice. The aim is to improve support for the person with MND if their speech and communication have been affected.

The MND Association welcomes your feedback to help improve our information for people with or affected by MND, or Kennedy’s disease. Complete the short questionnaire below and respond to all the questions if you can. Please ensure these views are your own and thank you for your valuable assistance.

Please be aware that your comments may be used as anonymous quotes to support our work, or raise awareness through campaigning or fundraising bids. This can really help to improve understanding and make a difference for all those affected by the condition.

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* 1. Which of the following options best describes you?

I'm living with MND

I'm close to someone with MND

I'm a carer or ex-carer for someone with MND

I'm a health or social care professional

Other (please specify)

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* 2. Which of the following do you feel the revised information will help to provide for people living with or affected by MND? (Select all that apply.)

An improved ability to raise awareness of needs and preferences

More confidence about how to guide health and social care professionals

More confidence that health and social care professionals will identify with the person, rather than just the disease

An improved quality of life through the provision of clear instructions about how care should be provided

Please add further comment here, if you feel this information will provide any other outcome:

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* 3. How useful did you find the following elements in the Understanding My Needs form?

	essential	very useful	quite useful	of no use
All contact details, for the person with MND, their team and the MND Association	All contact details, for the person with MND, their team and the MND Association essential	All contact details, for the person with MND, their team and the MND Association very useful	All contact details, for the person with MND, their team and the MND Association quite useful	All contact details, for the person with MND, their team and the MND Association of no use
Acknowledgement of other advance care documents to raise awareness of wishes for future care	Acknowledgement of other advance care documents to raise awareness of wishes for future care essential	Acknowledgement of other advance care documents to raise awareness of wishes for future care very useful	Acknowledgement of other advance care documents to raise awareness of wishes for future care quite useful	Acknowledgement of other advance care documents to raise awareness of wishes for future care of no use
Information about needs, such as communication and breathing	Information about needs, such as communication and breathing essential	Information about needs, such as communication and breathing very useful	Information about needs, such as communication and breathing quite useful	Information about needs, such as communication and breathing of no use
Information about the person's life and interests to provide deeper understanding	Information about the person's life and interests to provide deeper understanding essential	Information about the person's life and interests to provide deeper understanding very useful	Information about the person's life and interests to provide deeper understanding quite useful	Information about the person's life and interests to provide deeper understanding of no use
Space for photos if wished	Space for photos if wished essential	Space for photos if wished very useful	Space for photos if wished quite useful	Space for photos if wished of no use

Please enter any further suggestions on how to present or structure the content:

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* 4. Was the text easy to read?

easy

generally okay

sometimes difficult

difficult

Please add any further comments you may have on readability:

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* 5. Was it easy to find different items in the sheet?

easy

generally okay

sometimes difficult

difficult

Please add any comments you have about moving through the content:

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* 6. Can you describe how this resource has helped you? (For example, in accessing support or raising awareness of needs.)

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* 7. Do you have any other comments you would like to make?

Thank you for your assistance.

If you would like further guidance and support, please contact our MND Connect Helpline:
Telephone: 0808 802 6262
Email: mndconnect@mndassociation.org