PennyPi

Permanent incapacity

5 posts in this topic

Hello,

I live and currently work full time in the UK. I was diagnosed with scleroderma about 8 years ago and last year I was also diagnosed with rheumatoid arthritis (RA) and interstitial lung disease. I have really struggled with pain and lack of mobility this past year and have had to take a lot of time off work to fit in endless appointments and treatments, including six month course of cyclophosphamide. My employers are pushing for me to go down to part time work and it has started me thinking about eventually not being able to work at all. I was wondering if anyone here had any personal experience of requesting permanent incapacity and how the process works.
Many thanks

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Hi Pennypi,

 

Welcome to these forums!

 

I'm sorry to hear that you have been so badly affected by scleroderma and RA. I have interstitial lung disease, so can sympathise with you, although I have not had to go down the permanent incapacity route, so can't advise you from my own experience.

 

We do have a link to UK Disability Programs and Utility Benefits on our Disability Benefits page, which I hope will be useful to you and we have had other members who have requested permanent incapacity benefits, so it's possible that they may be able to advise you.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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It is very difficult to say as the disease seems to affect everyone differently and progress more slowly or quickly in each of us.

 

It is a progressive and currently incurable disease meaning it is likely to worsen over time.

 

Fortunately, there are a number of treatments that can help to allieviate many of the symptoms and this is one of the best sites to investigate the options.

 

I hope that with the correct treatment you will soon be fit enough to return to your previous job, if not, perhaps consider changing jobs or working part time. If getting out of the house is a problem, perhaps consider whether there are any jobs where you can work from home.

 

Good luck and best wishes.

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Thanks both Joelf and Dimarzio for your replies.

 

Ideally I would like to carry on working, full time if possible, as I love my job. But if I have learnt something this past year is that things can change very quickly and you cannot take anything for granted. That said, my last news are quite good as my lung test gave an improved gas exchange from 41% to 50%, and I am now on steroids which have pretty much taken the pain away. :yes:

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Hi Pennypi,

 

I'm so glad to hear that your last lung function test was improved and that your pain is more controlled now.

 

I also take steroids and they are a very effective medication, although I'm afraid I have suffered many of the known side effects with them, so I'm not quite so enamoured with them as I was! We do have a medical page for Glucocorticoids, Steroids (Prednisone) Warnings for Scleroderma.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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