I would like to ask Paul Howard, does anyone from Lupus UK lobby parliament on the behalf of Lupus UK?
Also, I know that the womens institute take on specific topics to support each year and they also have lobbied parliament in the past and made a huge difference. Could Lupus UK contact the women's institute to see if they would support Lupus, especially with lobbying. I am noticing more and more people having difficulty applying for Benefits and being turned down, it's a disgrace! I'm fortunate that my husband supports me financially but there could be benefits that I'm missing out on. I don't apply as I know the stress would just make me bedridden! Please help those who can't help themselves! X
Written by
Carolha
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Yes, there are people within LUPUS UK that lobby parliament. We have a few MPs who are patron members of our regional groups and they lobby parliament on behalf of people with lupus and we are also members of a cooperative lobbying group called National Voices along with other organisations.
With regards to the women's institute supporting us by lobbying on our behalf, I am not sure if this is something that has been broached before or not, but I can make some enquiries.
I'd just add that any of us can help spread awareness of our plight by contacting and educating our individual MPs. Lupus UK Factsheets are great for this. MPs are there to serve us - bear that in mind, make an appointment to see him or her and go forth boldly! "This is a chronic, progressive condition with no effective treatment" - an observation made in writing by one of DWP's consultant doctors some time ago in my case and pretty much sums up our collective prognoses.
You must have read my mind as I mentioned it in someone else's post that we ought to make January contact your MP month, so we can all Lobby the cause.
I obviously did Carol ; ) There needs to be more wide-spread understanding of this awful blight. My MP is really open to such things, as they all should be!
This is a great idea, and am for it all the way. I have just had a major flare that totally wiped me out for about 3 weeks ( due to having to stop taking metho and quinorix as they were damaging my liver) - have just started a reducing course of steroids (over a month) and at the moment feeling great-but do realise that the steroids are only masking my lupus and as I reduce it will probably flare again,going to see Rhuemy early Jan to see what the next step will be.......BUT, if I am well enough in JAN I will definitely be lobbying my MP....I am also a shop steward at work with the BFAWU....and again, if I am well enough and back at work (if they have me!!!!) then I will try to get a 'motion' passed at our national convention in June, so that perhaps my Union can lobby parliament too!!! x
The dwp don't seem to believe lupus is a coronic condition to Many people are stating there getting turned down, this is a disgrace they are sick medical evidence don't lie, more needs to be done via parliament, it seems to me this illness would only be passed if one of there family members have the it, I wouldn't wish this illness on my worst enemy, living with it is so hard but we look so well,
It's not that they don't believe it's a chronic condition Lennox. Our major problem lies in the fact that most medical text books record SLE as a remitting/relapsing disease of varing degrees and therefore DWP uses this to deny us benefits on the basis that we're all sometimes well enough to work. Of course, for the majority of us, that is not the case at all. Some may feel momentarily better inbetween flares - some never - but in a best-case scenario generally no-where near well enough to attend paid regular employment even if one's disease is presently non-life-threatening. Additionally, many of us (including me) can only manage our condition well by taking prolonged periods of rest.
Paul would it be possible to set up an on-line petition that we can all sign electronically and than submit to parliament? or maybe draft a standard letter outlining our grievances that can be printed and signed individually and submitted to our individual representative members of parliament?
I would suggest that a petition is not necessarily the best way forward. I believe they have to accrue at least 10,000 signatures before they can be considered by parliament and that would be a difficult figure to achieve.
I also think that a standard letter may not be the best idea, because individual's stories and experiences will make the case more compelling and more relevant for your local MPs. We can discuss what areas would be the most important to cover and I'd also be happy to take a look at any letters before you send them to provide my input?
So many sufferers don't just have sle lupus, they have other complications to go along with it, u have a nerve sheaf tumor, phrephial vascular problems, not just the so called normal aches and pains I have 3 different doctors looking after me vascular , Nuro , lupus , plus warfarin clinics it's not a easy life for any of us yet they seem to think people don't deserve the help, I'm lucky I still work part time but I do get a mobilty car, with help getting about, but have now started working from home due to taking to much energy getting up ready and out the door, and working,
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How many of you attend support groups for lupus? Are they run by your hospitals or a branch of Lupus UK? 
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