A student researcher attended our online meeting today and told us about a voluntary survey into the psychological effects of the event

11.00 am (UK time)

Say hello and offer your smiles to the universe.

They and you are very welcome

a link will appear here when there is a meeting

Bobbi
keep on keepin’ on
:writing_hand: :stuck_out_tongue_winking_eye: :heart:

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At the 11.00 am online meeting Paul, Ann and myself met a student called Khalidah from Hertfordshire. We agreed as a group to see what she had to say.

She is doing a research project at University looking into the effects of stroke on the psyche and will be submitting a survey for those affected by stroke.

Subject to the agreement of the Stroke Association her survey will appear on the site.

Bobbi
keep on keepin’ on
:writing_hand: :smiley: :+1:

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Look forward to having a look at the survey once it has the agreement of the Stroke Association. I do like a survey :smile:

Regards Sue

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Sounds interesting. Will have a look if SA approve it.

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She PM’d me directly this morning.
I referred her to Nicola

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It is weekend and matters like this will need to go for a group decision, so things will move forward but not at the pace that some here think necessary.

As they say, ‘Speak in haste, then regret at leisure.’

For those interested, this survey looks at the negative impact of stroke on the psyche, including suicidal impulses and behaviour changes. It is a subject that in my opinion doesn’t get enough attention.

Above and beyond the physical effects of stroke many struggle with feelings of inadequacy, losing any sense of direction and are susceptible to manipulation and influence that is not beneficial.

Personally I think that looking at this is important as it can have a long term effect on the future of some who find themselves coping with the aftermath of the traumatic event we call stroke.

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Khalidah is an educated young lady who is creating and offering this survey as a part of her course.

I think you might be interested to learn that she had been recommended to look at the online community here. She had also talked to patients at the early part of the process in hospital.

You have expressed concern that the material and the folk here have a wider contact. This will only happen in an open society. Closed doors is not the way to go.

Because this area is open she was able to find the meeting I had organised. My meetings are open and the others there were informed of who she was and why she was there.

Each of us had an informal chat together and I am pleased that this opportunity had arisen. A good experience was had by all. I’m glad that the posts on this thread are open. Contact on any level is valuable to us all.

I really don’t want to be held in a gated and controlled community.

Needless to say we did not exchange personal contact details, so our meeting was secure but we were able to discuss pertinent information. I think this forum works well in this respect.

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Who are you addressing?

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Well said Bobbi and thank you for bringing this to the forum. This is definitely an important subject to be discussed, as the psychological effects of dealing with the aftermath of stroke can have a detrimental long term affect on your recovery. I am 7 years post stroke and have been through some very tough times during this period.

I’m always keen to take part in these surveys, if I’m eligible, of course. After care following stroke will never improve if the stroke survivors can’t have their say.

Looking for to hearing more when this is approved.

Regards Sue

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81% of people disagree.
Surely it would have been possible for whoever gave the forum details to just give your meeting details ?

As laudable as the project is, the key question surely with all of the valuable research projects, what real world difference do they make ? Have any resulted in changes in the NHS approach ?

I can’t help thinking that if 2 NHS consultants and a professor can’t bring about changes for Cpsp, a student has almost no chance :frowning::frowning:

How many research project outcomes does the SA campaign on afterwards ?
How many does the SA press officer publish or add to the website ?
How often do the SA contact the govt health minister?

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I did not post this report of our recent jitsi meeting in order to enter argument, disagreement or debate.
I will leave those who read here to think what they will.

@Susan_Jane
I am glad I’m not the only one to think that this is a subject worthy of examination. Perhaps this young student who picked ‘Stroke’ as the subject of her University project will stimulate interest amongst those with influence.
The results of this survey will be informative and raise awareness of the trauma and its long term effects as a result of the experience. I have commented on this elsewhere and believe it has a powerful if hidden result.

keep on keepin’ on
:writing_hand: :smiley: :+1:

Someone somewhere recommended this forum as a point of reference when researching stroke.
That pleases me no end.
Please keep things open. Information should be shared, not hoarded.

I had a couple of heart attacks twenty years ago, the second of which required my resuscitation as I had died in the admissions area.
Then after thrombolysis further treatment offered by the hospital went some way towards addressing psychological issues as well as regular physical exercise, presentations on diet and so on.
This was given as after treatment to all heart patients. Although I spent a couple of years terrified that I was on the brink of dying I eventually got past this continuing in employment up to and beyond retirement. I actually took late retirement.

I feel that a similar post stroke treatment program should be part of the discharge process. Arguments about funding, relevance and effectiveness are overshadowed by improvements made possible by this sort of intervention.

If you don’t do the maintenance you will end up with a huge bill at some point in the future.

but I reckon I have waffled on long enough on this issue.

Anyway it was an interesting and stimulating meeting and I am pleased I could share some of it with you.

I’ll leave it now for whoever needs to have the last word here on this Zog meeting thread.
There will likely be another session on Friday at 7.00 pm as usual.

keep on keepin’ on
:writing_hand: :smiley: :+1:

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Hi
I see that you (Bobbi) have removed the “you” from the second draft of the follow-up post. I’ll make the assumption that both uses of you were a reference to me.

If one publishes a post and address it to someone then there is probability of a dialogue rather than a monologue. Where one anticipates that is over opinions that are (presumed) not shared then by definition causes either a debate and or a disagreement and perhaps both.

I don’t have enough spare energy to spend time on fruitless activity either.
I wish to advance the support of those smitten by stroke. I think the situation where we pool strengths for the aggregate advantage is best but I’ll settle for mutual ignoring.

Please do not ascribe opinions to me

If you asked my opinion you would find that we agree on many things.
For purposes of explicit example. I too think this forum gives more value by its contents being discoverable through search engines then would be the case if it’s were hidden

We could debate some assertions; for example it is a fact that it is already a “gated and that it is controlled”.
But the walls are transparent and the controllers are, for some of us 100% unresponsive which I think from clues on the forums gives you a more privileged position of influence than some (most) of us have.
In this regard I am lobbying for parity for ALL

In regard to transparent walls I am proposing that the switch is flicked to allow those posts from those people that cause them anxiety be able to still be shared but with the cause of anxiety removed - That is; they be able to anonymize some contributions.

I hope that when @KhalidahHameed 's study of the emotional after effects of stroke takes shape it will recognise and report that a significant element of the emotional stresses post stroke are anxiety related ( I also note that the opening assumptions in the entirely standard questionnaire are that all emotional reactions are negative) and I hope that she will come to understand that there are positives too.

I will also say that I have used far too much energy in private over the months defending your right to hold opinions. I believe you make a valuable contribution here for many. I hope I do the same. The difference in our contributions means that the breadth of people helped is larger than it would be with either of us.

Diversity is valuable, It can lead to debate which leads to understanding which can lead to better solutions for more people

Caio
Simon

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