End of Life: a guide for people with MND

1. We welcome your views on our publication, End of Life: a guide for people with MND

In response to feedback, this guide has been developed to support people with MND during end of life discussions, whether with their family, carers or health and social care professionals.

The MND Association welcomes your comments 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 your interest in this information?

I'm living with MND

I'm a carer for someone with MND

I'm close to someone with MND

I'm a health and social care professional for people with MND

Other (please give details)

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* 2. Is the information easy to read?

Simple

Quite easy

Complex

Very difficult

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* 3. Is it easy to find your way around the content?

Simple

Quite easy

Complex

Very difficult

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* 4. Is the item easy to physically handle?

Simple

Quite easy

Complex

Very difficult

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* 5. Did you find the information useful?

Very helpful

Useful

Basic

Unhelpful

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* 6. Do you feel this information will help to provide you (or the person you are caring for) with any of the following? (Select all that apply.)

an opportunity to find out facts and help reduce fear about end of life with MND

a greater awareness of how to plan future care as the person would wish

more confidence about discussing end of life with professionals

more confidence about discussing end of life with family and friends

an improved quality of life during end of life care, through being more informed

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

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* 7. Is there any aspect you would like covered in more detail?

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* 8. Can you describe how this resource has helped you? (For example, in accessing support, making an informed decision or opening difficult conversations.)

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* 9. 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