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Andrew
7th November 2014, 11:10
Hi all,

I am sure that most of you are well aware of this, but a quick reminder that the Association produces a range of information for health and social care professionals, which can be found here:

www.mndassociation.org/professionals

There is also a new online forum for health and social care professionals to discuss all areas of the disease and connect with colleagues in the field:

http://proforum.mndassociation.org

If you know anyone who may benefit from either of these resources, please do let them know.

Thank you,

Andrew

Cookewitch
7th November 2014, 12:06
Excellent idea, I've let our other branch committee members know.

Trevorhb
7th November 2014, 12:12
I passed on the professional link to our GP during our last visit, it was appreciated.

Andrew
7th November 2014, 12:32
Thanks Cookewitch.

Great Trevor, I know that a lot of people have given their GP the Red Flag tool which helps them recognise symptoms of MND early.

If anyone on the forum would like materials sent out to them, I can do that.

Best wishes,

Andrew

pete
7th November 2014, 12:59
Hi Andrew,
Anything that helps get understanding about mnd and its effects are very worth while, having said that ,I think it sums up the awareness void that exists even now, despite all the Mnda do ,there are so many medical professionals who have sparse if any knowledge about any motor Neurone disease,is it any wonder then, we have as yet nothing to treat the condition, if ever was a case of the tail wagging the dog ,this sad situation has to be eliminated,I hope that the new forum gets used as much as this one is .

Andrew
7th November 2014, 13:05
Hi Andrew,
Anything that helps get understanding about mnd and its effects are very worth while, having said that ,I think it sums up the awareness void that exists even now, despite all the Mnda do ,there are so many medical professionals who have sparse if any knowledge about any motor Neurone disease,is it any wonder then, we have as yet nothing to treat the condition, if ever was a case of the tail wagging the dog ,this sad situation has to be eliminated,I hope that the new forum gets used as much as this one is .

We hope so too, Pete.

It's very tough as some GPs will only deal with 1 or 2 cases of MND in their whole career, so it's about making sure that they are able to identify it as early as possible. Hopefully this info will go some way to changing this.

Best wishes,

Andrew

john
7th November 2014, 14:35
Andrew,

Is the pro forum going to be closed to interested parties. Letting us post might be too much although there is a lot of knowledge here but allowing us to look in on conversations would be interesting.
My late wife went to our local GP surgery which has 5 doctors and her own doctor was the only one who had any previous experience of mnd.

John

Andrew
7th November 2014, 15:16
Hi John,

Closed at present. If there is a topic someone would like to raise, they can pass their query on to their professional contact who can sign up and raise it for discussion.

However I will pass on your thoughts about it being open to view, if not contribute.

I know that some health and social care professionals do use this forum as a resource, even if they don't necessarily post on here (nothing stopping them). As you say, loads of knowledge here.

Best wishes,

Andrew

pacer1971
7th November 2014, 15:50
Hello Andrew
While we are not in the professional group it would be nice if we could read the forum without being able to post; for information as to how they think about us as patients.
cheers
Darryl

Andrew
7th November 2014, 15:55
Hi Darryl,

Thanks for your comment. Will certainly suggest it.

It might be useful for professionals to have a closed off environment where they can speak openly about the challenges they face treating people with, and understanding, MND without people knowing who they are.

However, I can certainly see that there are positives in knowing what conversations are going on.

Best wishes,

Andrew

pacer1971
7th November 2014, 15:59
Hello Andrew
I appreciate their desire for anonimity, they could use a "psuedonim" but it would be nice if they are going off on a tangent without respect to the MND sufferers, then we might have an idea as to what we are dealing with when we talk to the professionals.
cheers
Darryl

Andrew
7th November 2014, 16:12
Hi Darryl,

That is true and I'm sure the professionals forum would provide a unique insight into how MND is regarded / understood within certain roles.

Thanks for your thoughts.

Best wishes,

Andrew

john
7th November 2014, 17:00
Andrew,
Surely these professionals will have as much anonymity as anyone on here so all their conversations can be possible without identifiers. It may be that the community here could contribute occasionally as they have more experience than most. Would it be possible to give proforum members the choice as to whether or not their conversations were shared?

John

Andrew
7th November 2014, 17:18
Hi John,

At present, it is expected that they give their full name and job title when registering to the forum.

We certainly encourage professionals to look at this forum and, as I said, there is nothing to prevent them from asking questions on here too if they cannot find the answers in their own area.

I don't think it'd be possible or productive to limit what is shared on here. The forum works really well because anyone can access it and see what is going on without registering. There is no expectation that people register / log in etc.

A big percentage of people read the forum posts but don't log in / have a username (over 50%).

Best wishes,

Andrew

john
7th November 2014, 18:11
I wasn't suggesting changes here but on the new proforum. I have edited my post for this. I think this forum works fine apart from the kitchen salespeople who pop on from time to time.

John

john
7th November 2014, 18:12
How come kitchen is suddenly an acceptableword?

Terry
7th November 2014, 18:14
I echo what John says and that collectively we probably know more than must professionals and could probably educate them a lot. It would be adventurous if some of us could access and have a thread that we could answer some of there queries. It would need restricting but if a few people could act as a go between it would make a much more dynamic "professional Forum". My profession is now MND, do I qualify.

Regards Terry

Springtime
7th November 2014, 19:11
Terry, I think yourself, John, Graham, Pete, Joycie, Karen and a few more that I probably don't know would be invaluable to be able to also access the proffesionals site as you all give such excellent help and advice, plus compliment each other. Just saying. And appologies if I have missed others out.

Spring x

pete
7th November 2014, 20:31
Hi Spring,

I cannot see any GP using this forum, I don't know how different it is acros the country, but if we need an appointment now it's very much a question of when ?, not that is important because if you do get seen and I am told that we get priority at our surgery but what can they do if we are granted our ten minute slot apart from treat the symptoms as they arise,we have no specific medicine just make do and try that and come back if it don't work ,it's not the GPs fault ,they have other patients who do have treatments and drugs ,whereas we have none at present, I remain ever hopeful that one day we will be treated a lot better than so many poor souls have to date.

Terry
7th November 2014, 21:20
Hi Spring;

I think that we just need a go between, he/she does not need to be greatly knowledgeable, just diplomatic and know what's important and to write threads on things that all of us can contribute. Of course, none of this is relevant if GP's and others don't post.

Andrew; Their forum looks the same as ours, surely it should be set out differently.

Regards Terry

marieline
8th November 2014, 01:24
I echo what John says and that collectively we probably know more than must professionals and could probably educate them a lot. It would be adventurous if some of us could access and have a thread that we could answer some of there queries. It would need restricting but if a few people could act as a go between it would make a much more dynamic "professional Forum". My profession is now MND, do I qualify.

Regards Terry

I echo Terry's words on this issue. Rarely had i received a direct answer to my questions to professional. I must admit to having been pacified on many occasions with the offer of a gadget of some sort, when all i wanted was some information. I have learned more about MND from this forum than in my entire 17 years of Nursing career. Empower people please Not the opposite.

Best wishes
Marieline

ccinjersey
8th November 2014, 01:41
Like a fly on the wall Terry ! Or like the police watching and listening to the criminals from the one sided mirror !! I think you are all the qualified professionals as well as the qualified professionals.

(Sorry Andrew I can’t help myself :))

CCxx

Terry
8th November 2014, 12:47
Bad news, you're off to the naughty corner Cc.

Good news, I'm already there.

Hugs kisses for old times sake, Terry

ccinjersey
8th November 2014, 13:21
LMAO !! ;)

Oh come on Santa, give me a second chance, I will try to be good next time. Although I have a funny feeling Andrew is in the process of filing my deporting papers lol

In all seriousness it really is a brilliant site, I do hope the criminals, oops...I meant doctors use it :)

More hugs & kisses xoxoxo
CC

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