Economic impact of Vasculitis

I am involved in the Scottish Government Vasculitis Short life working group and the question of the personal economic impact of a Vasculitis diagnosis has been raised.

If you live in the U.K. and have lost your job, had to cut working hours or change your employment as a result of Vasculitis could you please leave a comment.

Thank you.

27 Replies

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  • When you say 'would you please leave a comment'.

    I am sorry but I cannot reply with details of financial loss or personal circumstances on a public forum.

    I would need data protection. Which is not available on a public forum

  • It's your choice whether to leave a comment or not. All I was looking for was a simple comment, something like I lost my job or had to cut my hours or it had no economic impact on me.

    I wasn't asking for personal details or financial information. There is a lack of evidence into the economic impact of a Vasculitis diagnosis as it's never really been studied, sometimes these sorts of straw polls can be very revealing despite being anectodal in nature and can lead to further research.

  • Hi Keyes, my hours were cut, which was agreed on on both sides; a lot more preferable to losing it which almost happened in the first year.

    Sally

  • I fell ill at just 22 in 1994, when still a postgraduate student. Apart from a one year period of flexible half time work I have been unable to work ever since, for 23 years. My condition has progressed - I have cerebral vasculitis in a very MS-like form - and I will never be able to work again.

    I fell through a benefits hole when I first fell ill, as a still-at-university student without the NI requirements to qualify for certain things. Luckily my husband supported me, but as he was still studying (which ruled us out of more benefits) we lived well below the poverty line for a number of years.

  • P.S. And I'm in Scotland. Fife when I first fell ill, Dundee/Angus now.

  • Fine, I thought you wanted more than anecdotal.

    Hope you get all you need to make progress.

  • I have had to reduce my hours at work due to PMR. This has resulted in loss of earnings, which I I am not happy about.

  • I lost my job due to ill health at age 56 but did receive an NHS pension. This is not enough to support myself but I had no choice I could not continue working.

  • I retired on ill health at age 49 as impact of PMR GCA Diabetes Fibromyalgia & Anxiety. Going on steroids long-term had major effect on me both good and bad. Now getting NHS pension.

  • Hi, I have EGPA diagnosed 4 years ago. I was off work for 6 months. And took about 3 more months to get back to full time.

    I am no longer able to do overtime which was expected in my job. However my employer has been supportive and allows me the time off for hospital visits and treatment.

  • Hi I was diagnosed in 2005 and have only been able to work part time since. I'm retiring soon and my NHS pension reflects this. If I wasn't married there's no way I could live off my pension. Having said that I'm grateful for being alive and being well enough to have worked part time.

  • Hi thanks for looking at this .I had to cut my hours due to Cerebral Vasculitis I find it crucial to find a balance ! I find stress a huge factor in flares so its important to me to look after myself well :) Diane

  • Sorry forgot to say I'm from Dundee ,Scotland

  • Hi, I was diagnosed with EGPA in February 2004. At the time I was working part time in a bank but was given early retirement due to ill health.

    I have since worked in a primary school, very very part time hours.

    Have never received any form of government benefit.

    If you need any further info let me know.

  • Hi,

    I have very recently lost my job, which has really upset me. i was diagnosed with GPA in April 2016 and I have been sick ever since. I have wanted desperately to go back, but have just been physically unable to return. The economic impact has been hard and I am upset to think I may be unable to work again. Even if I have the health to find another job, I worry who is going to want to employ me now! I am 48 and feel I am in the scrap heap; it's hard to deal with.

  • Hi my son (21 yrs old. GPA) has reduced his hours and taken a drop in wages. His workplace luckily are very supportive. Now works 24 hours a week until he can cope with more.

  • Thank you so much to everyone who has taken the time to reply. I realise that this is anectodal but hopefully will lead to further study.

  • Thanks for looking at this. It is often a forgotten part of a long term illness and the impact of economic worries also impacts on your health and the system for benefits is structured in a way which treats you as though you have asked for this dreadful thing happen to you! I think insurance's people may have should also recognise this condition as I have noticed people have had issues claiming. Good luck and let's hope some research is carried out.

  • I have GPA and have been ill for nearly 7 years. I managed to carry on working until a couple of months ago. I have upper and lower respiratory infections and have been either too ill to go to work or dragged myself in when I shouldn't have. I am hoping to go back back to work part time but this will have be a significant financial drop for me.

    I also have the cost of the 120 mile round trip to addenbrookes where I am treated.

    Hope this helps.

  • I was diagnosed GPA last year and have not worked since but still employed with no pay. Decisions will have to be made as I know I am not fit to do my present roll as very stressful fast moving job. Only 62 so years off pension but have to think of health. Fi ding reducing steroids very difficult and seems anxiety levels through roof.

  • I was unable to continue in my job due to all the symptoms and problems I have also probably be incapable of any other job so I was pensioned off due to incapacity.

  • I retired in 2000 at the age of 50 due to ill health. It was a further four years before I was given a diagnosis of Churg Strauss vasculitis. I was able to access a reduced occupational pension early due to my health.

  • Hi I was diagnosed at age 51 in 2004 with GPA. Too ill to return to work though my job was kept open for me for 3 years. Still too ill so given early ill health retirement then but unable to look after myself & family so my husband took early retirement to look after me. Our income was substantially reduced. However due to my medical complications we have had to travel to London & Cambridge(still do) & this has cost lots of money over the years to travel & stay there whilst getting expert advice/treatment.

  • Hi, I took voluntary redundancy, age 55 ,in 2000, due to feeling so exhausted. Thought I would have a break and then get an other teaching job.

    One month later I had a T.I.A (mini-stroke) and 4 months after that was diagnosed with MPA and significant kidney failure. After years on dialysis and a problematic transplant, I have not worked again. The financial loss has been significant.

  • What a good question.I lost my job due to ill health. It took 8 years for CNSV to be identified as the cause of my deteriorating health. Without a diagnosis my employer's support systems were not available to me. This continues to have a financial impact as both my state pension and employer pension are reduced due to years of economic inactivity.

  • Hi would rather comment privately if there is a way too of how it has affected me in detail

    The answer is yes it has

  • Lost my job and career ill health retirement !!

    Obviously knock on affect is financial big style this then affects relationship

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