Extra help and concessions


You know how to edit a post? Very useful thing to do.

You could go back to your first two posts in this thread and add links and suggestions that others have offered to build it up into something more like you are trying to achieve.

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


I suggested a few times that somebody might like to start a wiki post of the best resources that have been posted on here like Elyse’s YouTube channel. I think that can very usefully either include or accompany one on the sort of thing that you’ve been sharing

A wiki post can be edited (and created in the first place) by anybody with a trust level above basic.

The welcome post is a wiki so you can edit that. It’s getting a bit long and I think at some point emerald or I or someone else will rationalise it a little.
It has links to other useful sources such as the face-to-face and online groups around the country and to the best of the best of the posts here which again is a wiki that anybody can add.
To create a wiki write a post, post it then use the three dots on the bottom then select the option to “make wiki”

If you’d like more detailed discussion we can have a private message, carry on here, talk about it if you make it on Thursday, have a 121 zoom or Google meet or…

Have you yet discovered how to chat with one or several people and how to create a thread/topic with only invited members able to access it?


Everyone who has had a stroke should apply for PIP. Ring DWP and start a claim they will send out a hideous long form to complete - I did the form for my partner.
When you get the form make sure you write the worst day you have so not put the times you can do stuff!
If you don’t then agree with their decision you should definitely appeal!
Once your stroke survivor has PIP carers can get careers allowance.
Check and see if there is a Care and Repair service in your area they can help with appliances, applying for grants etc really helpful.



Thanks I know how to edit a post and I promise I will add some links over the next few days! And try and consolidate.

I may use a word doc or something and try and do it a bit better!


I hope you don’t take my suggestion as a criticism of your excellent offering.
What you are putting together, I am sure you realise, will be something very useful to others.
We often find ourselves in the dark wishing for a little light to see just where we are.

As always,
Keep on keepin’ on
:writing_hand: :smiley: :+1:



I took it as a compliment that you understood what I was trying to do better than I did :wink: :smiley: :laughing:

I will keep on keepin on and

As always

Be cool like a polar bear :polar_bear: :wink:



Cheers Simon,

I’m not quite that advanced yet! Perhaps we can have a chat on Thursday - I will join unless something else happens - which I bloomin hope it won’t. Had enough medical surprises this week already and it’s only tuesday!!

Stay cool :polar_bear:


I need some lessons!!! Don’t worry @ you all

I am not afraid to ask for help so be ready

:laughing: :wink: :laughing: :polar_bear:


That should be helpful for someone! I am not considered a senior here for quite some time yet, which has been a problem for me. I appreciate the effort though, and will keep it.


ESA - Employment & Support Allowance.

Along with the assistance I’ve read above on UC & PIP, I thought I would share a few things that may well help you get an ESA application over the line.

First up, I was self employed and was told to go for ESA as it was not means tested. I completed the application only to be told by the Dept for Work & Pensions that my app was denied as you must have 2 consecutive years of National Insurance contributions. I had a 1 year gap in 2020-21 (after 32 full years!) due to the bloody pandemic when we all followed the rules and didn’t work.

If this has happened to you, don’t panic. If you call HMRC, you can make a voluntary NI contribution over the phone. It cost me precisely £163.80. Within 3 days and a few calls to the DWP my ESA was approved.

A second thing to know. I had my stroke on the 1st April 23. I was expecting a back dated payment but the NI gap issue stopped it. If you pay the NI contribution, your claim starts from that payment with a 6 week penalty. My first payment is due in the 31st Oct. I have lost out on over £2k of benefits.

Thirdly, as much as I’ve been messed around, don’t be put off. Keep pushing and you will get what you deserve, don’t rely in the DWP updating you, ring them. You may have to wait 40 minutes for them to answer but do it. The best time to ring them is at 8am or after 4:30.

Good luck to you all, if I can help just drop me a line.



Forgive me all I am trying to play around with some differnet formats to try and tidy up the original list and add the extra bits…

This format seems ok?

@SimonInEdinburgh @RobD1 @Bobbi @EmeraldEyes @Rups @ anyone else who might know!!

Does this seem ok? If I keep consolodationg?

Also is there a way for others to be able to edit it? etc etc?

Let’s start with a decent format :rofl:

Thing / Topic / ?? Description Link / telephone number
PIP Personal Independence Payment (PIP) replaces Disability Living Allowance (DLA) - how and when to claim, rates, eligibility. Personal Independence Payment (PIP): How to claim - GOV.UK
Universal Credit Universal Credit is replacing 6 other benefits with a single monthly payment if you’re out of work or on a low income - eligibility, how to prepare. Universal Credit
Freedom pass London - disabled or other versions The travel pass for disabled people allows free travel across London and bus journeys nationally

Possible local equivalents|https://www.londoncouncils.gov.uk/services/freedom-pass|

That above had problems and tried to correct them below but wasn’t quite what I wanted - wanted some differnt fonts and 2 links… but i’ll keep playing around

Thing / Topic / ?? Description Link / telephone number
PIP Personal Independence Payment (PIP) replaces Disability Living Allowance (DLA) - how and when to claim, rates, eligibility. Personal Independence Payment (PIP): How to claim - GOV.UK
Universal Credit Universal Credit is replacing 6 other benefits with a single monthly payment if you’re out of work or on a low income - eligibility, how to prepare. Universal Credit
Freedom pass London - disabled or other versions The travel pass for disabled people allows free travel across London and bus journeys nationally - possible local equivalents Freedom Pass | London Councils

Think I can get it sorted like this wih some time… any thoughts?

:polar_bear: :polar_bear:


And is it also maybe ‘archiving’ this topic and starting anew?

:polar_bear: :wink:

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Hi Kiren

You’re doing a wonderful job of mastering markdown !

what you probably should consider in balance is that many of the eyes and brains reading the posts are compromised as indeed are yours and mine so while we may be able to format using markdown we have to consider whether we’re creating greater cognitive challenges ?

Personally I find your formatted posts crystal clear. Also note I’m using a mobile phone in portrait mode and they format just fine

What isn’t clear to me is whether this is a final post in which case you seem to have duplicated rows in both tables or whether you were illustrating concept and just using lorem ipsum type text?

Another thought that occurs to me is that it will be useful to include a link to a post of “forum members experiences” with advice. Because pip for example Is legendary with the delays, difficulties, describing things in a stilted fashion to be your worst day, number of appeals required, just bloody-mindedness of the DWP and the French management consultancy that does the interviews cant remember their name though ASOS?. As well as forum members advice I would include agencies like citizens advice. The government links to official information is generally definitive and useless, the citizens advice etc is generally actually useful!

I applaud your efforts in doing this :slight_smile:

In some ways they mirror mine in thinking how the forum software facilities can be used to elevate it above being 100% chat to having all the empathy of the chat plus building a usable resources that are not in my opinion provided by the official sources (including my stroke guide website) - which are an un- integrated factually correct and confusing source without understanding of our actual realities which as we all know are consistent but highly varied

Jolly good effort on its way to being jollygood results



Oops :slight_smile: you also asked about a way for others to edit.
If you go to the wrench symbol under the three dots at the bottom of your post you will see an option that says make wiki

As I’m almost sure you know if you make it a wiki then anybody can edit it and the software keeps a version controlled record of the deltas - I haven’t actually tried to ever reverting a post on here but I assume it’s possible it’s certainly possible manually

You will see I have made this particular post a wiki so you can open it and add

Polaris was here…

Polars says he woz ere :polar_bear:

Cheers :wink: :polar_bear:

However @SimonInEdinburgh I can’t see the wrench under the 3 dots - it only gives me a delete option? Is that just my eyes again ? :rofl: :polar_bear:

Is this perhaps reserved for regulars?

K :polar_bear:

I think you’ll get a notification I just made this edit now
:penguin: ← underwater chicken

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Just trying to show a mistake and a correction!

edited that and this :smiley:

:wink: :polar_bear:

I will try and get the full list of what I’ve done put together and see how unwieldy it is. Then think about other things… One stap at a time. but your feedback is as always appreciated @SimonInEdinburgh

Basically that’s just an illustration of a google doc with a table. quickly done - some links are better than others and actually - funnily the links put in this forum and then copied out are better than just links put straight in ha ha. I may have to get some IT peeps on here to help!! @im72 ?!?!?

I may play around with spreadsheets or something else too!! Forgive me but, I know it’s sad, I actually miss spreadsheets!!! I used to use them A LOT!!

:wink: :polar_bear:

You’ll find the wrench after you tap the three dots but you can only do that on a post with you initiated

I have also noted that in the past 10-14 days since I have been using this forum as my second home that the number of users has increased by around 100 or so - sorry haven’t kept count. But i think that’s great?!!

So I have been telling my OT, the lady at Newham Enabled Living, my GP, my consultant, my psycologist about how much it is helping me… And asked them to mention it to any of their srroke patients I would love to see many many more people on here and I’m not quite sure that it’s promoted even by the SA enough - I was told about it and signed up in Jan but then haven’t really used it until recently.

Not sure what the ‘trigger’ :rofl: was, but i’m very pleased.

So I’m saying spread the word and the love peeps.

Maybe have a think @CommunityAdmin about if you could help promote it a bit more in things like SA assessments - because mine was great but can’t really remember the chap mentioning this specifically.

Keep cool K :polar_bear: :wink:

It’s all to do with Discourse Trust Levels, you have to be at Trust Level 3 to be able to create your owns posts wiki. I think you are at Trust Level 1 so you can edit wiki posts.

Don’t know if you’ve completed any of this, it’s an interactive walk through/tutorial which might gain you another trust level, but I’m not sure. There are 2 levels to it, basic and advanced usage.

To start it you need to create a personal mail and key the following to get started:
@msg-bot start {name-of-tutorial} (which is “basic” or “advanced”…I think, it was quite a while ago when I did it)…and now he’s popped up below because I mentioned in here :roll_eyes: :laughing:

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