Before its too late!

livinglegend
livinglegend Member Posts: 1,425
edited 1. Aug 2010, 14:40 in Living with Arthritis archive
I don't often rant, but the time has come.

It is no use AC sitting placidly on committees behind locked doors, who will then ignore our needs and our right to disabled benefits just to stab us in the back. AC surely had an input to the recent changes in ESA? Why did they get it so wrong? A 94% rejection rate for ESA is a travesty that should have been foreseen.

With the many celebrity sufferers of arthritis and with organisations such as AC, why has there been no great outcry with letters or even emails to news editors about the way some of our members are being denied ESA and soon DLA by Atos/DWP. It is NOW that there should be a real campaign by people at the top of AC to condemn the actions against members of our organisation.

There is a good AC publicity budget for making our present wishes known and this is a support that some members now desperately need. The AC publicity machine should already be shouting out off the rooftops and especially in the press about the abuse of the system, but nothing is being done! Time for the top people of our organisation to start officially contacting the extensive press publicity machine and push our case before we are all crushed by this iniquity.

To use an Americanism, It's time to kick some ****!

Joseph 8)
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Comments

  • frogmorton
    frogmorton Member Posts: 28,211
    edited 30. Nov -1, 00:00
    I totally Agree!!

    Shall we ask the mods to take this thread as evidence of our strong feelings??

    Love

    Toni xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    You certainly make some good points Joseph, but I think we face the problem that arthritis isn't glamorous. Yes, it's on the increase thanks to an aging population, but it isn't exciting or interesting. Basically it's not cancer. That's the glamour disease of our age - tell someone you have cancer and they are instantly sympathetic because they think they know what it entails (they don't, but that's neither here nor there). Many cancers are curable now, and the Holy Grail of much medical research now is finding a cure for all cancers. Arthritis (and its research) comes a poor second to that. It's mostly associated with the retired, so the perception (probably - I don't know, I'm surmising) is that as they are on a pension or two they don't need any other form of income. We know that that isn't necessarily true.

    Perhaps what is needed is a shift in perception: more and more younger people are being affected by the various forms of arthritis and more public knowledge of those is important. By its very nature it is a contrary disease and people do not understand that. That is what makes it so difficult for employers (and family members), the fact that it comes and goes in the way that it does. It is a debilitating and frustrating condition that isn't glamorous. That is fundamentally what is wrong with ESA claimants etc etc etc. We're not glamorous. DD
  • livinglegend
    livinglegend Member Posts: 1,425
    edited 30. Nov -1, 00:00
    Within the 2008 AC Annual Report, the Chief Executive, Neil Betteridge writes, 'So when our voice shouts loud, it can come as a surprise', 'the role has enabled me to promote the work of Arthritis Care at the highest levels throughout 2008: meeting government ministers, speaking at conferences, commenting on literature and above all offering the perspective of the person who matters most – the individual who actually uses the health service.' So the ability and the contacts are there. It is time to shout loud at government ministers, speaking at conferences, commenting on literature. Action now, before it is too late and it has to come from the top on down!

    So, what set me off on this trail of misery. Reading through the forum threads regarding people who require help with ESA/DLA. It is a real surprise that such a large support organisation that has so many Regional Offices and Branches throughout Britain, forum members suggest that we should go to outside organisations, i.e. CAB, for help on what deeply affects their lives and standards as disabled people. Why is it so difficult to hold advice and guidance on the problems of applying/appealing ESA and DLA on the forum central servers, so that all members have the help they need at the click of a mouse? Why can't they visit their local Office/Branch to talk to someone about the help they need with the forms? This is 2010, not 1950.

    Rant over, (for now).

    Joseph 8)
  • livinglegend
    livinglegend Member Posts: 1,425
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    You certainly make some good points Joseph, but I think we face the problem that arthritis isn't glamorous. DD
    I am sure that you are right, but cancer sufferers got their priority by shouting loud at ministers, conferences and using publicity. Time for AC to do the same or remain forever a Cinderella disease hidden in the backwaters of society.

    Joseph 8)
  • ichabod6
    ichabod6 Member Posts: 843
    edited 30. Nov -1, 00:00
    The executive section of this charity has lots of words and little bite.

    Far and away the best things that AC supports are its self
    management courses (woefully underfunded) and this web site.
  • livinglegend
    livinglegend Member Posts: 1,425
    edited 30. Nov -1, 00:00
    ichabod6 wrote:
    The executive section of this charity has lots of words and little bite.
    Far and away the best things that AC supports are its self
    management courses (woefully underfunded) and this web site.
    (woefully underfunded) According to the 2008 accounts, Challenging Arthritis cost £121,122 out of Branch reserves of £3,322,498.
    Pages 44 & 53, AC Annual Report, 2008
    They also spent £194,588 on the PARE manifesto, whose website is at http://www.paremanifesto.org this was officially launched in March 2002. Take a look.

    Joseph 8)
  • frogmorton
    frogmorton Member Posts: 28,211
    edited 30. Nov -1, 00:00
    Well what are we going to DO then??

    US??
  • livinglegend
    livinglegend Member Posts: 1,425
    edited 30. Nov -1, 00:00
    As this is a very controversial thread, I expect the mods will pass on our comments to the people above them.

    So, it is fair that we now give them a chance to reply or not.

    Joseph 8)
  • haagan
    haagan Member Posts: 84
    edited 30. Nov -1, 00:00
    I agree arthritis is not considered the life destroying disease that it is by ESA. Questions are not relevant and do not allow for flare ups etc. I showed the questions to my MP and he could'nt see relevance to Arthritis. I'm in any campaign to make our voices heard!!!
    It's not glamarous but we need to get same coverage as other illnesses. Fay
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    Within the 2008 AC Annual Report, the Chief Executive, Neil Betteridge writes, 'So when our voice shouts loud, it can come as a surprise', 'the role has enabled me to promote the work of Arthritis Care at the highest levels throughout 2008: meeting government ministers, speaking at conferences, commenting on literature and above all offering the perspective of the person who matters most – the individual who actually uses the health service.' So the ability and the contacts are there. It is time to shout loud at government ministers, speaking at conferences, commenting on literature. Action now, before it is too late and it has to come from the top on down!

    So, what set me off on this trail of misery. Reading through the forum threads regarding people who require help with ESA/DLA. It is a real surprise that such a large support organisation that has so many Regional Offices and Branches throughout Britain, forum members suggest that we should go to outside organisations, i.e. CAB, for help on what deeply affects their lives and standards as disabled people. Why is it so difficult to hold advice and guidance on the problems of applying/appealing ESA and DLA on the forum central servers, so that all members have the help they need at the click of a mouse? Why can't they visit their local Office/Branch to talk to someone about the help they need with the forms? This is 2010, not 1950.

    Rant over, (for now).

    Joseph 8)

    Joseph I was thinking the same. I am currently filling out DLA forms but having to get support from CAB and Carer support group but they have much less experience of arthritis whereas AC knows all our difficulties.And getting to the offices for an initial appointment is proving a nightmare too as its first come first served so need to stand in an early queue too.That is not easy at all.
    I went to an autistic support group- for 3 hours-to fill out my sons DLA forms.They knew the difficulties he faced so well.

    Elizabeth
  • kathbee
    kathbee Member Posts: 934
    edited 30. Nov -1, 00:00
    So, what set me off on this trail of misery. Reading through the forum threads regarding people who require help with ESA/DLA. It is a real surprise that such a large support organisation that has so many Regional Offices and Branches throughout Britain, forum members suggest that we should go to outside organisations, i.e. CAB, for help on what deeply affects their lives and standards as disabled people. Why is it so difficult to hold advice and guidance on the problems of applying/appealing ESA and DLA on the forum central servers, so that all members have the help they need at the click of a mouse? Why can't they visit their local Office/Branch to talk to someone about the help they need with the forms? This is 2010, not 1950.

    Rant over, (for now).

    Joseph

    Count me in Joseph

    I dont have the loudest voice but I will
    do my best.

    Looking like we are waiting for Neil Betteridge
    to reply/comment.

    Good on you Joseph for raising this important subject.

    Kath
  • ichabod6
    ichabod6 Member Posts: 843
    edited 30. Nov -1, 00:00
    What a load of waffle'

    He of all people should be out there banging the drum
    and shouting from the rooftops.
    Where is the bite?
  • oneday
    oneday Member Posts: 1,434
    edited 30. Nov -1, 00:00
    I am glad Neil took the time to reply.

    I am dreading the cut to tax credits in 2012 based on income level as its going to affect me.....suppose i could starve to death.
  • robertls
    robertls Member Posts: 2,304
    edited 30. Nov -1, 00:00
    I've read Neils reply several times..........

    Sorry.............but it seems there is a lack of any real 'spark' there....

    Blah....blah.....blah......

    Not one thing 'stuck' in my mind........

    Seems to me to be the usual 'political' response.................lots of words...........but saying nothing.....

    Disappointed................Rob x
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    We need to have something started asap the system is c***p and an organised protest should be started by groups like Arthritis Care. I was lucky I have a small work pension very, very small, but it gives me some help. I am awhere that others struggle more than me and it makes me sick.

    Love Sue
  • suncatcher
    suncatcher Member Posts: 2,174
    edited 30. Nov -1, 00:00
    Very disappointed with the response given. I am angry sad frightened and no one seems to be sticking up for us. if they are it is not enough. It wont be long before people will resort to drastic measures to get by. I can see it. We are going back wards not forwards do we have to resort to begging bowls. Shout harder for us. Most in this organization are mature and have pensions think of the young fight for the future generations it will effect.
  • livinglegend
    livinglegend Member Posts: 1,425
    edited 30. Nov -1, 00:00
    I would firstly, like to thank Neil Betteridge for his reply. It would have been easy to ignore the comments and hope that it would go away and I ask the Webmanager to pass this on.

    I realise that it is not an easy situation for any charity and while you can be a small voice, it is possible through the medium of the press to make it heard. Win or lose, the attempt is what counts.

    Quote from reply above: Arthritis Care's involvement in the development of ESA was all about pushing policymakers and officials to develop the fairest possible assessment process for people with arthritis. We had some successes and some failures but we did not, then and we do not now, endorse ESA.

    So why has the lack of endorsement not been more widely known? Even a short paragraph at the bottom of page 8 is better than nothing. Local radio is an excellent medium to spread our message. If every AC Branch Secretary was requested by the CE to contact their local radio station by email, stations are always in need of human interest stories. They will even send out reporters to report live from Branch meetings if asked or record comments over the phone for later broadcast. Cost? 1 email.

    Perhaps the AC Publicity people are already developing something along these lines, as we need a much greater understanding of arthritis within the community at large. Keeping it quietly among ourselves or within committees is in my opinion not a good way to oppose the system.

    As such I and other members will undoubtedly be listening to our radios and watching the media for comments. I would not expect an immediate sudden change of direction, but it should happen in time.

    At the moment there is still a lack of clarity about how the changes will be implemented.
    Simply looking through the threads on the member's forum, the changes are already distressing people and have been for some time. A 10 minute read once a week is all it takes. Not doing so, gets people at the top detached from the membership.

    I will also thank the members who have posted replies of support to this thread. I consider that our collective point has now been made and I hope that AC will thus become more positive in their opposition.

    Joseph 8)
  • ichabod6
    ichabod6 Member Posts: 843
    edited 30. Nov -1, 00:00
    Hello Joseph,

    It was good to read your considered response which I feel
    balances up my immediate blast but we are singing from the
    same hymn sheet.
    Cant accept "people at the top." I presume the executive section
    are wage earners paid out of our subscriptions and donations
    and therefor responsible to us as organisers and managers and
    not leaders.
    Now I'm sounding bolshie but I hope you get what I mean.
  • sharmaine
    sharmaine Member Posts: 1,638
    edited 30. Nov -1, 00:00
    Hi Joseph

    Glad to see that AC are fighting the cause for justice. It would be good to have the medical profession backing this campaign too. They are the ones who treat our pain and discomfort. They see our loss of mobility and the impact this has on our lives.

    Its been a rather expensive several years for our government. Fighting wars costs billions. They're trying to save money by cutting the wrong services. What they're doing to arthritic sufferers with degenerative conditions is wrong.

    Well done for bringing this to our attention.

    Go kick some butts!

    Sharmaine
  • frogmorton
    frogmorton Member Posts: 28,211
    edited 30. Nov -1, 00:00
    "At the moment there is still a lack of clarity about how the changes will be implemented.
    Simply looking through the threads on the member's forum, the changes are already distressing people and have been for some time. A 10 minute read once a week is all it takes. Not doing so, gets people at the top detached from the membership."

    Quote Livinglegend

    How true.

    I still want to know what I can do to help - what we can do.

    Should we have a sticky thread on esa and DAl so that we could add to that? Would this make it easier for those at the top to quickly catch up on the isue??

    Love

    Toni xx

    PS I too appreciate the response
  • livinglegend
    livinglegend Member Posts: 1,425
    edited 30. Nov -1, 00:00
    frogmorton wrote:
    I still want to know what I can do to help - what we can do.

    Should we have a sticky thread on esa and DAl so that we could add to that? Would this make it easier for those at the top to quickly catch up on the issue??
    What to do? Send an email to [email protected] and ask them what help is required publicitywise, if any. Email the local press, (look up their websites online and their 'Contact Us' section) with comments about how applying for ESA/DLA has affected yours and other arthritis sufferer's lives. A good place for you to start.

    A sticky thread on People applying for ESA and DLA? One for the Webmanager, who I am sure is watching this thread. Or perhaps a whole new section with everything such as threads and links to resources put together for easier access by members. A one-stop online Benefit Claim section.

    Joseph 8)
  • silverbreak
    silverbreak Member Posts: 46
    edited 30. Nov -1, 00:00
    I don't often rant, but the time has come.

    It is no use AC sitting placidly on committees behind locked doors, who will then ignore our needs and our right to disabled benefits just to stab us in the back. AC surely had an input to the recent changes in ESA? Why did they get it so wrong? A 94% rejection rate for ESA is a travesty that should have been foreseen.
    Joseph 8)
    Just to return briefly to the original post I think one of the main difficulties is the sheer diversity of arthritis. I can't pretend to understand RA although I understand there is medication? So AC cannot just say all Arthritis sufferers should get ESA or DLA because from the numerous posts it seems to affect everyone differently and as has often been said pain can't be measured. No one would want and the UK can't afford to give benefits a system that made getting benefits easy.
  • joanlawson
    joanlawson Member Posts: 8,681
    edited 30. Nov -1, 00:00
    Not being directly affected by disabled benefits, I must confess that I hadn't fully appreciated the present worries before reading this thread. So well done, Joseph, because you have raised my awareness with your rant, and I sincerely hope that your ''kicking ****'' will result in greater justice for people with arthritis.
  • livinglegend
    livinglegend Member Posts: 1,425
    edited 30. Nov -1, 00:00
    I can't pretend to understand RA although I understand there is medication? So AC cannot just say all Arthritis sufferers should get ESA or DLA because from the numerous posts it seems to affect everyone differently and as has often been said pain can't be measured. No one would want and the UK can't afford to give benefits a system that made getting benefits easy.
    RA is incurable, permanent and affects all joints in the body, usually worse in several joints at a time. Hit your fingers hard with a hammer every few minutes for several hours, that gives you a taste in just a few joints. Currently I have about 10 joints that feel like that at the moment and I take regular double dosage painkillers just to survive outside hospital. In cases of RA it can be extremely painful as the joints affected are being forced apart and permanently damaged. Even if not in excruciating pain, then the affected joints ache all the time. I won't even comment on the permanent fatigue or the distorted joints that also result.

    Medication, often after failed attempts at various types, slows the progress of the disease, but there is still an ongoing deterioration to all the joints and many people will also suffer from side effects such as nausea, etc.

    Nowhere in my postings on this thread have I said that ALL arthritis sufferers at EVERY level should get ESA or DLA as a right.
    Quote: the way some of our members are being denied ESA and soon DLA by Atos/DWP.

    ESA/DLA application should be a fair system. For some applicants crippled with the pain and other effects of severe arthritis it is not. They are being denied their right to the benefits that they desperately need to live with dignity. If we make the effects of arthritis more widely known to the general public and the DWP, then they may at the least, get a greater understanding of our condition and we could be treated more fairly.

    All I have asked is for AC is to provide assistance to rightful claimants, (not free ESA passes), and to get our disease more widely publicised and thus better understood.

    Joseph 8)
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    As always livinglegend, you are fair and considered in your posts. Arhtritis in all its forms is a pernicious disease and one that is not easliy understood by those that do not have it. It does affect different people in different ways, it can be chronically painful and debilitating and it is difficult to assess its effects on people. It alters lives beyond recognition sometimes and causes a huge strain not only the sufferer but those around him/her.

    Certainly a sticky about benefits - what is available, how to go about claiming and how to appeal would be handy. We are a group of people for whom traipsing down the local library for info, or getting to the CAB etc can be an enormous trial. I suppose there is information on-line too, I must confess I've never thought to look as I tend to forget I have the world at my fingertips - I'm still getting used to this computing malarkey!

    These are certainly unsettling and worrying times. Cuts do have to be made and wherever they fall they are going to hurt. The benefits system is an obvious choice as it is so widely abused by so many people - and they are allowed to abuse it. It does need tightening and restricting - and that means that genuine claimants will get caught up in that. We do need a louder voice. DD