I have been sitting reading blogs and questions and getting more and more enraged. I too am going through yet again another ATOS round (thats the next 4 months of my life gone). Can I ask how many people use this site? Would it be possible to do a poll to find out, then find out how many are still of a working age, even if they've been chucked out of work due to Fibro. How many have other related diseases. When I see that diabetics get loads of stuff free, especially prescriptions and we have to pay over £100 a year for a prepaid. I am sure that most of us would like to be back at work if it was at all possible, but its not. I would rather have my £30K+ a year, two to 3 hols a year, all the things I wanted when I wanted and be able to work for them rather than be thrown on a scrap heap with a mere pittance to exist on and then fight tooth and nail to get any sort of benefit, which usually renders us incapable of anything afterwards. Now I'm not saying diabetics are shirkers, my sis in law is diabetics, but she has far less wrong with her than me, I'm just saying its unfair.
Personally I'd like to see Fibro classified like diabetics and all those exempt diseases so we could get the help we need and the money we need without all this fighting. Has anyone taken a petition to Downing Street and asked for us to stop being hassled with ATOS and be classed as unfit for work and able to claim not only ESA Support but also eligible for DLA as well????
I feel a letter to my MP (Nadine Dorries) coming on!!!!
Thanks for letting me have my rant, but I am serious and think we should stand up as united whole and make ourselves heard.
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lcm27
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19 Replies
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I am slightly lost for words at this post.. I have fibro plus 5 other conditions . I do not have diabetes though I have relatives who do... Some are comparatively young and manage their condition well and they work.
Diabetes is easily diagnosable and has many debilitating effects ...my aunt went blind... Fibro although being painful and debilitating at its worse can affect people slightly a little or a lot and its much harder to diagnose and as pain is an individual thing its hard for the professionals to know how bad we are ..... But it won't kill us ..... But I am not sure why diabetics have been targeted ... Why not people with arthritis ... People with terminal illnesses .. I feel to target one particular group of people is unfair
My son-in-law is severely asthmatic and has to pay for all his prescriptions, despite having a long-term, chronic illness which is unlikely ever to improve. It's not just we fibro sufferers who bear the inequalities of this imperfect system.
i suppose there is a problem because fibro is such a variable illness, Some sufferers are mostly inconvenienced, whilst others are severely handicapped. It would be unfair to classify all fibro sufferers as disabled, when many are not. Perhaps the case should be judged on the extent of each person's needs
I'm not sure what the answer to this could be. ATOS will never be fair, as they have a huge financial incentive to find people fit for work, even tho' they are patently not in many cases! Their malign influence covers all illnesses, not just fibro - they have even declared dying cancer patients fit for employment, which is truly horrifying! There have been so many appeals - at great expense - that the present system must be costing far more than the sum total of the few fraudulent claims which may have been eliminated.
I believe that ATOS will soon be discredited to the extent that they will lose their money-making contract - we can only live in hope.
If you do write to your MP, maybe you should start with the plea that all people who have long-term disabling conditions should receive free prescriptions. Of course, if you are on benefits, you will get them free in any case. but if you are working at all, it can be a big expense. Also, there is room for a plea that ATOS should be removed and a more equitable authority put in place.
There are a lot of action groups fighting for fairness within the system. If we all persist we may get somewhere, but I fear that it will take time!
Moffy x
Hi
The system is anomalous, when I worked I had to pay for all my asthma meds, I could die without them but I saw a report where a district nurse who worked full-time got all her epilepsy drugs on the NHS for free, her condition was well- controlled,she could work and drive.
I am not saying one condition is more deserving or worthy but the system is bizarre. Why are some conditions exempt and others are not, and surely access to free prescriptions should be means tested by rights as there are many people who struggle to pay and yet there are those who are exempt who could easily afford to. I feel this should be looked at. To make it more fair.
Diabetics (and other defined life threatening illnesses) only get prescriptions free- nothing else. If they were too ill to work because of their diabetes then they would have to go through the exact same ATOS process. And as others have said- if you get ESA etc then you will be entitled to free prescriptions.
What we pay for prescriptions is really not a lot compared the actual cost of some medications- particularly the likes of lyrica (pregabalin) which is hundreds of pounds a month. Personally I'm grateful that I live in a country with a system like the NHS and not having to fight insurance companies for the drugs I need, and also grateful for not having a horrible life threatening illness like diabetes.
Asthma is a life threatening condition also yet no free medication,it can kill in a matter of minutes if a severe attack happens,i am asthmatic and am also truly grateful to our wonderful Drs and nurses etc who care for all of us x
You sound very bitter that someone is getting something that you're not.
I have fibromyaglgia and diabetes and I'm still struggling to work full time.
I paid for all my prescriptions for years until being diagnosed with diabetes just over a year ago. Every morning I have problems getting out of bed because I am so stiff, my 25 year old son has to help me have a shower as I can't step into and out of the bath without falling.
I sit at work in pain all day, then go home and lay on the sofa all evening because I am exhausted, go to bed at 9pm and then start all over again the next day.
I would love to be able to stay at home on benefits but because my son lives with me and also works I can't get any help. I have never in my life earnt £30K+ a year, my last holiday was six years ago, one hours drive away from where I live, how lovely that you could have what you wanted when you wanted, I never have, I have to save up.
I'd like to see how you would cope with diabetes, can't eat chocolate, biscuits, cakes or anything that I like at all, constant blood tests when I have a needle phobia, can't walk more than a couple of steps which could be down to diabetic neuropathy (still trying to find out), I think we deserve to get our prescriptions free with what we go through. Pick on someone else.
Until you have something yourself you have no right to say anything about it.
A line has to be drawn somewhere on what medications are free. When you pay for prescription you only pay a contribution towards the cost not the actual cost of the medication. Scotland get free prescriptions because the government has made that possible.
Think yourself lucky you do not live in other parts of the world where you have to pay for all the medication.
Btw I would gladly give up my free prescriptions if you can take away the fact I have to inject myself 4 times a day. Test my blood 6(or more) times a day then there is the blood tests every 6 months to check if I have any long term damage.
From my understanding of your post you are not singling out anyone with any particular illness but using your sister as an example as she is Diabetic. It is probable that your sister's condition may be managed well so that she has this quality of life that I think you are saying living with Fibromyalgia you do not.
Of course, this is an individual situation and of course there are many Diabetics Type 1 & Type 2 using diet, tablet or insulin to control their condition. Each illness whether it be Diabetes, Fibromyalgia, Asthma etc etc, has a varied affect on each individual. As with Fibromyalgia & other illnesses some may be at one the top of the scale and other at the bottom end. For instance if you look at the Fibro scale via link below, that anyone of us can go up and down at anytime. I think this can be said of many illnesses
I do personally agree we should get more help with prescription costs. However,I feel being impartial that we can compare to any other illness to ours if we are no living it. For instance when people living with Fibro are out will look well but still in pain & people do not see us poorly as we do not invite random members of the public into our homes. So, again being objective we don't know what people go through with any illness at home in private.
However this is by the by as I think you are frustrated with the system and many of us agree with you there. There are things you can do, the link below is a coalition for prescription charges to be free for long term conditions like us, with an MP letter template for you to fill in the gaps.
There are also various epetitions you can sign if you use Google , search epetitions gov uk and then search the 'subject' in search bar ie: prescriptions. A letter to the MP wouldn't go a miss either about any subject you feel strongly about.
Please can I remind members that politics can be discussed on the community if it is disability related only.
I apologise for the long post but I hope interpretation of the post is fairly accurate and the links to the epetitions & the coalition are of help
Can I please remind you all that the guidelines please ask that you participate in this site should be with respect, honesty and in the spirit of supporting and learning from your fellow users.
Please can I kindly ask people to speak to each other in a nice manner and also remember that in general in communities sometimes posts/comments can be interpreted wrongly on some occasions
I agree Emma,having any kind of chronic illness effects each individual in different ways depending on how well any condition is controlled etc,i have fibromyalgia and asthma,and bi polar,i have to say asthma is the one i would firstly and gladly live without! xxx
Hi Lcm27, Sadly we don't like in a perfect world,i understand your frustration,we must however deem ourselves much more fortunate than many others who live in extreme poverty etc everyday,hope you feel in better spirits soon,take care xxx
You know that reminds me of the passage called A thought for the day starting., If you have food in your fridge, clothes on your back, a roof over your head etc etc
It continues back cannot post a link , you'll need to Google it to read the rest. Sometimes there is an extra 2 lines from Mark Twain : "Dance like nobody's watching; love like you've never been hurt, Sing like nobody's listening; live like it's heaven on earth."
Maybe we'll forget the dancing part, but i'll sing if you will !!
Ha! Oh wish we could do the dancing even if i do have left feet! Yes i have come across a lot of Mark Twains wonderful sayings,i think they humble us from time to time, Della xxx
Sorry everyone, I rambled and shouldnt have. I did actually mean all people with long term chronic illnesses that are known never to recover from not just diabeties. I didn't word it very well did I? I know most of us have other chronic illnessess to go with the fibro, me included, but I just feel that all long term chronic illnessess should be prescription exempt but you are all right, where do you draw the line.
I will have a look at the links mentioned, they sound interesting. I did actually mean ALL people with long term chronic illness, not just fibro shouldnt have to go through all the ATOS stuff. I only get ESA support group, no other benefits, although am going to try for DLA again.
Sorry again to everyone, I'm just in the middle of all this ATOS stuff yet again and its got me so wound up today for some reason I fear I've gone well and truly off the rails.I seem to be having one of those days. As you say, be grateful for small mercies.
I'm off to eat a massive slice of humble pie and go back to living in cloud cookoo land
We all have bad days ... I usually rant at the other volunteers then have to aplogise ... You have explained you are having a bad time so lets just forget it and have a look at Mdaisys links ... There may be something that can help
I can only try to emphasize what you are going through i haven't as yet claimed any benefits,i have recently had to give up work as i couldn't cope anymore,yet i dare not even begin to claim for pip , i think dla is now known as ,the stress involved is far too much for me to deal with right now,i wish you lots of luck,i hope you get it all sorted asap,sending friendly hugs your way xxx
between you me and the gatepost, lol, I would sooner have all the conditions I have than diabetis, my best friend has diabetis and has severly impaired sight, she is now registered blind, she hasnt and doesnt claim for anything, she is marvelous doing what she does, I really dont think I could cope if I lost my sight and couldnt see all the beautiful flowers ect, different matter if you are born blind, you dont know any different but to lose your sight after about 60yrs must be awful, i admire her greatly , she just gets on with life and makes jokes about the silly things she does, because of her sight, I feel we all have to make the most of things we cant alter, and do our best to alter the things we can.....gentle hugs to all ...Dee
xx
Hi
Ditto, my mum is nearly blind due to macular degeneration and she is deaf and has severe RA as well. I have to help her a lot but she lives alone and copes and I wouldn't,t swap with her for all the world. The loss of a sense is truly terrible. I feel ashamed sometimes when I complain about how bad I am feeling. But I do think that many chronic health conditions should get medication for free, the system is an ass. Who decides what conditions are deemed more serious and life-affecting than others?
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ESA plus STRESS equals BAD FIBRO
How can you get your employers to understand what its like to have Fibro and how you don't know how you are going to feel day to day?
Thought I'd pass this information on 
