MND individual research project

[eglj]

Hi,
My name is Enlli, and I'm a sixth form student hoping to study medicine next year at university. Ii am doing a project at school about Motor Neurone disease, and have made a questionnaire for you to fill out (to get some primary sources). My Grandfather died of the disease, so it is a personal subject for my project.
I would be extremely grateful if you, or a family member could answer the questionnaire as it would help me immensely
Thank you in advance,
Enlli
http://forms.gle/wBzEkCbxYTTx6mcy7 <questionnaire link

[Arcadian]

Diolch / thanks for the interest in MND, particularly after family impact.
Have filled it in...

[denise]

ive filled it in for my husband

[TinyLady]

I have filled it in. I was unsure about one question though about options...

[denise]

i dont remember stephen was given any options

[shelly21]

I've filled it in. Good luck with your career

[Zante]

done it. wasnt offered any options!

[denise]

I feel left out. What happened to our options if someone else was getting some 🤔

[TinyLady]

denise - I feel left out of many things! Not sure what the options could even be?
1) ignore me
2) tell me I'll be fine and send me away
3) prescription for endless cake

Seriously, I'm not sure we have options do we?

[Claireflo]

Filled in on behalf of myself and my dad. I was also unclear regarding the question about options as none were presented other than to take riluzole. Good luck with your project and future studies.

[Christopher]

eglj

If you do pursue a career in medicine the most important thing is not to loose your humanity.

I met a wonderful medical student recently who I could see from her actions, words and eyes that she was going to make a wonderful doctor.

Remember every patient deserves respect and dare I say it, even love. The patient does not want to be there.

The simple action of putting your hand on an arm, or holding the patients hand can make so much difference. In this politically correct World even a hug.

We have all seen various levels of care. Some of us have had many operations.

No matter what a patient is suffering from, human contact is very important.

Loosing a child about 24 years ago the doctor turned around and said "Dads need hugs too", she proceeded to turn around and hug me, it made all the difference.

If you are in the room when someone waked from a general anaesthetic, hold their hand, the thanks you will receive will be immeasurable.

If a parent says a certain thing is wrong with their child, listen to them, they know their child.

Don't ever presume that because a patient is laying in a hospital bed that they have lost their intellectual capabilities.

Admit your fallibilities. Admit and introduce yourself as a junior doctor, whether it be HO, SHO, REG or Senior Registrar. Don't be offended that a patient might know more about a subject than you. Every day is a learning day. No matter how experienced you become as a consultant.

[denise]

I read somewhere that every medical person should spend time as a patient to understand what it feels like.

[Heather R]

We have options to take any medication suggested, and whether to have a feeding tube or go on NIV. But these things are presented to me as solutions to problems, rather than choices. I would have appreciated NIV and feeding tube being presented as an option with the opportunity to think through the alternative, learning more about consequences of not taking up these options, that would be more respectful and empowering.
Christopher I agree with a lot of what you’ve said here, but am aware there are people in this world that would hate to be touched, to be sensitive to this.
eglj all the best with your career. X

[Christopher]

I read somewhere that every medical person should spend time as a patient to understand what it feels like.

About 18 months ago I had a consultant say to me that he never realised what pain was until he had a bad back for a couple of days.

[Cinderella]

Hi eglj I too have completed your questionnaire and hope you are able to produce a really informative project summary from all our answers and do well in your A Levels.

May I suggest if you are interested in pursuing as a career - that it may be worth contacting (and sharing with) the neurology department at Sheffield Hallam? Professor Shaw can be found online and mnd is her remit.

https://www.sheffield.ac.uk/medicine/people/neuroscience/pamela-j-shaw

Indeed, from what you read on this forum, most every hospital could do with greater understanding of how to care for someone with mnd. I am terrified at the thought of ever having to stay in hospital again.