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Thread: What Do We Want from Our Forum...... In answer to Flymo's question

  1. #1
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    What Do We Want from Our Forum...... In answer to Flymo's question

    Hello to Everyone. I have been a member on here for a year or so. I originally posted as I wanted advice and clarification on My Husbands PIP claim.
    What I wanted......
    1) The understanding of Others in a similar position
    2) Clear Practical Advice
    3) Answers to specific queries that others may have experienced themselves
    4) Examples of How others have dealt with their problems
    5) And sometimes a bit of Sympathy Who Doesn't?

    What I did Not Want..........
    1) People arguing about Who is More Knowledgeable than others
    2) People using My question as a soap box for Their views on their Mistreatment by The Powers that Be!
    3)Posts that are Just Rants about Atos/Capita/DWP/Duncan Smith/The Tories etc......
    4) Divide and Conquer posts for example.... I got turned down but Joe Bloggs up the road gets PIP/ESA/Mobility/Income Support (use as needed) and He is a Drug Addict ..... Most people on Here are addicted to Prescription Drugs and could not cope without them.
    5) To lose Valued Informed Members because Some people can not help but to have a dig at them.

    I am not a member of Rightsnet but I do follow their forum, One to see if someone comes up with an answer to a question I may be interested in and to keep abreast of Benefit News
    I am a member of Benefits and Works and apart from Their Guides which are excellent I find the forum not much use at all.
    I am a member of a FB group that offers help and advice and since the Departure of Two excellent advisors ( unpaid) The group has started to self Implode on itself with Rants and Political postings becoming more common.

    The Only difference to Me regarding if Someone is a ''Professional'' Advisor or Not is that One is Paid to give advice and The Other Gives Their Advice for Free.
    Some ''Professional'' Advisors are complete novices with regards to New Benefits such as PIP and follow Guidelines the same as DLA which will not help at all!
    Some Unpaid Advisors are Experts in One Particular Benefit Purely because They have been through all The Avenues to Get it.
    Some Advisors whether paid or unpaid Try to Help but get it wrong.

    So Without Blowing Your Trumpet Flymo, Please do not leave the forum Because For Me You ticked all the Why I joined Posts and None of The I do Not Want's

    What Do Others Want or Think

  2. #2
    Senior Member nukecad's Avatar
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    100% agree.

    I was composing a reply also, and may post it later.

    But you have put it so well dukedog that I want to look at mine again.
    I don't know everything. - But I'm good at searching for, and finding, stuff.

    Migration from ESA to Universal Credit- Click here for information.

  3. #3
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    I came here for some questions, I was a member before but I forgot both the email address and passwords.

    I like this forum for both it's help and being able to be honest about how you are feeling too. I don't like to tell people/share how I feel as I never feel like sharing with others for fear of complaining or boring others. Here I feel is a nice space to sometimes say 'you know what I feel really bad' and share thoughts.

    I also need help with my benefits and I struggle with cognitive function, so really I need patience. I may be a frustrating poster as I ask questions, maybe the same question, but things just don't stick in my head at all anymore which really frustrates me more than anyone as I was always very quick to pick things up.

    People's advise and help is invaluable to someone like me and the patience I have been shown is lovely as I know I can be frustrating with queries as I am frustrated by me.

    I don't know if something has gone on, but I hope no members leave because of arguments or anything else. This is a nice and helpful community and it's nice if we can help each other in some way.

    So thank you to anyone who has helped me here and I hope, even in a small way I can help people in the future.

  4. #4
    notnamedbill
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    I maybe completely wrong but I think some of the bitching is because we are in the silly political season and I'm not sure why at least one of vikstars posts hasn't been deleted because it is inflammatory.

    Ok I have similar views as flymo but not completely, a few times I have said he as a tendency to wear rose coloured glasses, I am brash particularly when I am in pain and I have had a few posts deleted because I know I went too far with the words but not the sentiment, flymo on the other hand is much more adept at being diplomatic.

    The other thing and I suppose it contains some politics and that is that mobility PIP is tougher to get at the enhanced rate and as such we are starting to see some who are loosing their cars, I'm deep in the mix of this, because I live in the West Midlands, and told i can walk between 20 and 50m (DWP say this) I cannot get mobility but in non PIP areas they can get full mobility. Flymo on the face of it seems happy with this but if you read some of his other posts he is not but realises that when claiming this is irrelevant.

    I don't want to pick sides but in saying that I have gained valuable information and motivation from this site as it is now! I suppose by default I am. I know it's no great loss but I'm not interested in being on a politically motivated site so if it becomes one, I'm off!

    In hope I've not been too OTT for the mods

    NNB

  5. #5
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    Thanks for starting this thread, it's very helpful. I agree with Nuke that dukedog has expressed how many of us feel very well. Although the busiest area of the forums is around benefits there are many other aspects to it as well. I am here as someone with a lifelong physical disability, who does not currently have any benefit queries or up to date knowledge or experience that would help anyone else. But I do have some detailed knowledge of living independently as a wheelchair user, and accessing work as a disabled person. Sometimes I don't post regularly but this site is important to me and I appreciate being understood. I have had good advice and support, and sometimes been able to offer suggestions to others.

    I was very actively involved in replying to the consultation papers the DWP published about PIP and have consistently written to my MP, etc as I have always been concerned about the changes to the mobility component. It is well documented that these concerns were largely ignored and the consequences of this are going to hit hard in my opinion. I think we are just starting to feel this now. I'm not convinced it is helpful for anyone in the middle of this to focus too much on the injustices of the DWP; however practical, informed advice is always helpful.

    We need to stick together as a community, I'm sure many people would miss each other if we weren't here. I think many of us feel fond of Flymo, in my case I appreciated his input as a fellow power chair user, and I always appreciate his humour and good sense. However, even without the fall out of yesterday I can understand why he feels the need to be away from here at the moment. There have been some new posters recently seeking advice from Flymo at the start of their conversations - quite understandably, no criticism implied in this. But I am certain that Flymo has never courted this, and would be uncomfortable with it. As has been stated there is a huge wealth of knowledge and experience within this community, and everyone has something they can contribute that may help others. Flymo also has to manage his energy and wellness carefully at present in order to get through his law exams. Flymo if you're listening in, we wish you well my friend.

  6. #6
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    When it comes to giving advice I think people need clear and concise information.

    There are far too many long, long detailed posts on here, some of which I feel present a far more complicated picture than is always needed.

    Some people seem to have fallen into the trap of thinking that they have all the answers to everybody's questions.

    Obviously newcomers will have a very different sense of what this forum is and looks like - but to me, having been a member since 2012, the community spirit that was here when I joined has now drifted towards the forum being all about one person, what they say, what they think.

    This is one of the reasons I hardly post anymore.

    We all have something to say, we all have something to contribute on here.

  7. #7
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    i like this site.My pip claim has been resolved. i justpop in here to see how others are doing. I dont see any hierachy on this site. There are some big contributors who give a lot of time and energy while dealing with own disabilities. i have much respect for that. Likewise there are the occassional commenters who sometimes contribute a nugget of information that can be extrememly important to a lot of people. Then theres peeps like me with very little knowledge about benefits, but i have first hand experience what people aregoing through with pip and esa claims and perhaps i can offer a little emotional support or empathy.

  8. #8
    notnamedbill
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    Fortunately or unfortunately PIP as changed the landscape and it depends on personal situations as to which one fits.

    My condition started in earnest the beginning of 2012, although it had been with me a few years prior to this, it was always known as high morbidity but low mortality, studies with the last six years have changed it to high morbidity and high mortality! I looked around for help and support; on disability sites I met with your not disabled? A bit like the Harry Potter true blood scenario! So as a muggle I went away. The question is, as it changed - not totally its still about and rears its ugly head sometimes. But PIP as changed things I now consider myself as slightly disabled, I can't be fully disabled because the true bloods say different.

    Change is the key word here, DLA is no longer the governing regulation and with each passing day the knowledge around it becomes less important. So in comes the new knowledge which does by default run roughshod on the old, the effect on the old flag bearers is to lower their status and it sets fear in the rank and file particularly as it toughens up in some areas. It also allows more like me to get the help and support that is needed.

    I for one think DLA was broken or was unfit for today, it may have been good in its day but from the outside it had become a cash cow for the lazy at the expense of the disabled, I can see the same revolution happening with the blue badge scheme. I'm not saying that PIP doesn't need tweaking because it does but my guess is: so did DLA when it first started.

    I was on CAG back before PPI and the banks fiasco and yes I was one who took the system to court, I lost against lloyds who put london barristers up against me and a politically motivated judge was in charge. Eventually we won but the group changed, it had to meet the new needs and us old stalwarts drifted away.

  9. #9
    Senior Member nukecad's Avatar
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    There are far too many long, long detailed posts on here, some of which I feel present a far more complicated picture than is always needed.
    Indeed most people just want a simple clear answer.
    However the benefits system is complicated and sometimes a simple answer is not possible, some of the ins-and-out, and strange quirks in the rules have to be explained. (Especially where multiple benefits are involved).

    Some people seem to have fallen into the trap of thinking that they have all the answers to everybody's questions.
    This is a fine line to tread.

    You can't answer everything, but you don't want to leave it to someone else and risk the OP not getting and answer at all.

    This is one way that a forum 'dies'.
    New members don't get a reply, they don't come back, those just dropping in looking for advice see no answers given and so don't register. Existing members see the number of posts dropping off so spend their time somewhere busier.
    Eventually nothing gets posted and the forum dies. (I have seen this happen to other forums).
    Once this happens it is very hard to get it up and busy again.
    I don't know everything. - But I'm good at searching for, and finding, stuff.

    Migration from ESA to Universal Credit- Click here for information.

  10. #10
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    The question of whether a person is disabled or not is a strange one I think. Yes, I'm disabled but I don't look it. I was born with this impairment thanks to the NHS giving my mum a drug without worriying on the possible side effects of baby on board. Did i get compensation - no. Did I get entitled to special school - possibly but my parents wanted me at home, not living a hours drive away. Every job I've got through the Two Ticks system. Yes I've been an outpatients at hospital since I was 4. Yet surprisingly enough, I didn't qualify for DLA, yet my daughter does and my condition is and has always been worse than hers. Will I qualify for PIP - probably not, waiting for reconsideration. Will I go to tribunal - yes, I'm disabled and I need the help. Strange isn't it that with all these facts, the government thinks I'm pulling a fast one - would just like to put them in my place and see how they like it.

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