Raymounds condition or disability?

[marcuspaul123]

I feel raymounds and related conditions should be considered a disability and allowances financly benifits awarded for medication ect off work esp in winter as it can be disability effecting everyday life why does the DHSS see it as only a temporary condition and not a potential real disability interested in any views and what can we do about it we need to promote this as a disability like being disabled ect?

[Kingfisherblue]

I agree with you and for the Scleroderma too. They have not got a clue what it is like for us with Raynauds and Scleroderma. I have tried 4 times and the last time was told by my assessor to buy bargains and to go and sell at car boot sales.

[marilynmcl in reply to Kingfisherblue]

No....don't think so on just having Raynauds. Maybe if you have more serious conditions then yes, if they stop you from having a 'normal' life and you need help in day to day living then yes you should qualify for benefits.

[babyinny in reply to Kingfisherblue]

Kingfisher that is totally unacceptable for an assessor to make those remarks. If you feel you fit the criteria you should appeal the decision and get CAB to help you with your claim Kathy

[Redoralive]

Hate to be that person but not everyone with raynauds is "disabled". When I was diagnosed with raynauds almost 3 years ago I still worked full time and with a round of iloprost and some good gloves I was more than managing my symptoms. Just recently a doctor has suggested viagra to open my blood vessels and help with circulation because the rapid change of temp has really exacerbated the problem.

It wasn't until I got my scleroderma diagnosis a year and a half ago and had serious complications that I became "disabled" and now I have a blue badge for my mobility issues and benefits to support me until I can go back to work fully (starting light duties on Monday so fingers crossed).

A lot of people have raynauds, most don't even know it's a problem and just go about life. If you classed everyone with a slight problem "disabled" then people who are genuinely suffering from serious problems would be so much worse off. You can apply for a winter heating allowance with scleroderma (as I did last year) and if you are struggling financially because you genuinely can't work then benefits like PIP are a good place to start as they ask doctors about your diagnosis and about your abilities.

Should also add that if you need help with prescription charges try looking at the prepay plan. I have dialysis for kidney problems now so I get free prescription but I was prepaying for mine before that and saved a fortune.

But no, I don't think our disease is a disability as such... It can cause kidney problems so you need dialysis, lung issues so problems breathing, muscle problems so problems walking and other organ damage. But unless you're struggling with a serious life changing side effect of the disease then in my opinion it's only your attitude holding you back from living a normal life.

[marcuspaul123 in reply to Redoralive]

You are right really but thought it was worth opening a debate on the topic

[babyinny in reply to marcuspaul123]

Hi Marcus Eligibility

You must be aged 16 to 64 and have a health condition or disability where you:

have had difficulties with daily living or getting around (or both) for 3 months

expect these difficulties to continue for at least 9 months (unless you’re terminally ill with less than 6 months to live)

You must have lived in England, Scotland or Wales for at least 2 of the last 3 years, and be in one of these countries when you apply. If you’ve recently returned from living in another EEA country, you might be able to get PIP sooner.

The process is different in Northern Ireland.

You can get PIP whether you’re working or not.

There are additional rules if you live abroad or if you’re not a British citizen.

So if you fit this criteria by all means claim. Health conditions effect people in many different ways if your not happy with the outcome you can appeal. You can read more about this on at gov.uk/pip Hope this helps Kathy

[bookworm]

Hiya currently only think I have primary Raynauds, however I think it's a condition rather then a disability. There does need to be more awareness about it however each individual person is affected differently by, some more severe then others, so it is wrong to call it a disability. As for too long I let it define me. I try not to anymore as I other things going on at the mo.

there is pre payment prescriptions.

[Rking50]

I found this post you may see if it is helpful as here in the US autoimmune diseases was the last to be added to the SSI list but you have to meet certain criteria and Raynaud's with conditions can be one.

In the UK from what I read if you have CAB Citizens advice help you fill out the form you are more likely to be approved or at least seen by a tribunal. I hope this helps. Notice what Margo274 has to say.

healthunlocked.com/sruk/pos...

[Tollie]

Hi there I agree and disagree with some of the comments. It is a disability condition for some people like myself. However my condition started at a very young age at 16 but I worked until last year I have Raynaulds and scleroderma it is attacking my organs it shut down my kidney and I mean it like I never had one I have had so many test done and its not there anymore. So even though I am blessed because it usually attack both kidneys my other one is fine my lungs are also affected I am constantly tired my whole body is affected so I am on disability and no its not what I want I would love to be able to work I had two jobs so I worked as long as I could. I was in the hospital three times last year alone and I know there are people worse off than me with this disease and yes it affect some of us differently. So I am extremely happy for any one who can still work with this condition but I am not one.

[kel55 in reply to Tollie]

As we all know Raynauds is Microvascular disease and some who have this have other areas of Microvascular disease, like true migraines (not just an head ache), vascular issues around the heart and brain.

I perfectly understand that having simple raynauds (no lesions, alsers or gangreen) in just your hands is not a disability but in some cases it is a handicap. A handicap means an inability to do something because of a disability. Irwin mitchels advert were a person unfortunatly looses his leg shows at the end a person playing football and scoring a goal, so he has a physical disability but hes not got a handicap when playing on crouches football. I havnt got a physical disability but if l tried any sport l would probably die (dependant upon the severity of the heart attack) so l am handicapped in this area. by cutting out this word we have narrowed the definition of disability to just someone with a physical disability. l keep being refused Disability because im not disabled enough? yet im laying in bed with chest pain while the person who UNFORTUNATELY lost his leg plays football. Until this method of saving money disability is changed then some who need it (raynauds with alcers and gangreen) will not get it

this rant isnt finished

[bluesgirl]

Not everyone wants to be labelled as being disabled. It depends on how much Raynaud’s or Scleroderma affects your normal life. I have Raynaud’s and Scleroderma with too many awful complications to list but l don’t want to be seen as disabled.