I would really appreciate some advice. I have been diagnosed with mild SLE and am applying for ill health retirement from the civil service- Alpha pension scheme. My initial application was rejected but I am appealing (not least because they lost the report from my Rheumatologist!). The criteria for ill health retirement under Alpha is that the member has suffered a permanent breakdown in health involving incapacity for employment. My application was rejected because it was thought my incapacity was unlikely to continue until my normal pension (11 years away). It was thought I had sufficient time to benefit more from my current treatment of hydroxychloroquine (which I have been taking for about 7months). and explore other treatment options.
Has anyone else been on this journey? Do you have any advice about proving that the incapacity will last?
Many thanks. Apologies for length of post
Written by
Rockgrrl
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Hi rockgrrlIts a big, step your taking and whilst i dont have personal experience of it , my advice would be to contact Citizens Advice. They can help guide you thru this and are at the end of a phone. O3444 111 444 is the number.
There website has also got helpful info too. Im sorry you feel you must take this difficult step. There are other treatment options if hcq is not now being as helpful for you.
Hope this is helpful and keep safe. Best of luck. Xx
After 6yrs of suffering with this evil illness, I feel I have got to the point where I tick enough of the boxes to apply for ill health, but even now I'm unsure I will get it.
There is a list of drugs that your specialist will have, that can try with you. So they may feel one of these treatments will work.
It might be the case that you might have to go through all these treatments before they will be happy to process your application.
I hope this isn't the case with you, and you get it soon.
If i was you i would try other meds that might make you well enough to work. Working also helps with self esteem and that helps with immune system functioning properly. So think feom that perspective too. If no other meds work for you to make you work normally or part time then i would apply again and you will have more evidence that you tried all avenues before applying for retirement
I was working in local government when I retired but I had previously worked in the Civil Service and I know that the rules are much the same in both organisations. To get ill health retiral you have to be PERMANENTLY unable to work between now and your normal retirement age. In other words there has to be no chance of you improving enough to work (even part-time). If there is any chance of your symptoms improving sufficiently to allow you to work, ill health retirement will be refused. You have to remember that if you get ill health retirement you will get the same pension as you would if you had worked until normal retirement age. As you have 11 years until you retirement this is a very large some of money! A lot depends on what the doctors say, but if your SLE is deemed "mild" I think it highly unlikely that you will be granted ill health retirement at this point. Obviously, if your condition worsens this decision would be reviewed. I was refused ill health retirement as although doctors confirmed that I was unfit for work, they could not say that this would be permanent. I stayed on long term sick leave until my sick pay ended and then took early retirement (not ill health so I didn't qualify for a full pension). Sorry to be the bearer of bad news but this was my experience.
Are you sure you want to do this? I was forcibly retired/made redundant from a job I loved in 2012 while I was really unwell (at that point I had had lupus for 6 years and been diagnosed for 4). That flare made me ill for quite a while, and at the time I was relieved not to have to worry about work. However since then I have had long periods of wellness and have really missed both the money and the status associated with my job. Becoming a 'non-contributing' member of society can leave you feeling a bit pointless. I really believe that had proper adjustments been put in place at my work, I would have been able to carry on for a few years - and got a better pension as a result. I also really think it would have been good for my health - because to be suddenly sidelined left me feeling like a non-person and led to depression, weight gain, etc etc that it has taken me a long time to climb out of.
Lupus is horrid but does not necessarily steal your life. There are other treatments apart from hydroxychloroquine and some can give you a very good quality of life and long periods of remission.
If I could do things over again I would certainly have fought the successful attempt to take my career away. I am not saying that retirement is not for you, only that I think you should think carefully about what you are doing. Eleven years is a long time and you might be quite well next year and regret giving it all up.
I totally agree with this. Also reasonable adjustments can be made to make dealing with the condition whilst working achievable. I would explore this before trying to retire from work.
I had the same problem in getting my ill health retirement granted. I think it's possibly common especially if you are young. My union rep did not seem surprised that I would need to appeal to reverse an initial decision not to give me medical retirement, so It may even be fairly "standard practice" to be denied without further evidence
The sticking point is the needing to "prove" that health symptoms were permanent. I did get a successful appeal. I think the key is to have your Drs backing up everything you're saying and if possible get your medical team to put in writing how unlikely (or likely if you do want to try fight staying in work) you will be to see any future improvements.
It may depend on your symptoms too, for me fatigue was a big reason I could not manage to stay in my career and medics were willing to say things like I needed to pace myself, that no medication could really totally solve fatigue. I also had one Dr willing to write it was unlikely my current symptoms would improve much over the next 5 years (I am not sure if somehow the 5 was a "magic number" but I believe it did help my case)
Hi. I’ve been through it with the NHS Pensions just last year. I’m 50 and got higher level ill health pension. I’ve got sjogrens and it’s the fatigue and brain fog that was the killer. I’m happy to chat through it and or share my paperwork if it’s helpful? I can vouch for what a roller coaster it is. I was made to feel like a liar etc and got no support from my employer. I wrote to my MP in the end to get them to start paying - they were useless. It’s a tough time so look after yourself x
Thank you so much, that is really helpful. It would be fantastic to get an idea of what you said because I feel it is mainly the fatigue and brain fog that affects me. So, it would be great if you were willing either to share what was said or your paperwork. Not sure how you can do this privately on this network- do you know?
Rockygrrl I had a neuro psychologist assessment showing my working memory was poor. When I reported I could no longer manage drug dosages safely (as a GP dealing with morphine for terminally ill patients) that was sufficiently frightening to the powers that be to get me my NHS ill health retirement. That neurological psych assessment paperwork was crucial. Also the occupational health consultant assessment showing sufficient adaptations had been made at my work place over the years, and also the rheumatologist's report stating all possible treatments had been added over the years.
I would say do appeal the decision. Anything that mentions inability to work, that it is extremely likely to be long term, permanent, that your Lupus affects your all your abilities etc is worth pointing out.
I think it helps retirement decisions the more you stress that it's extremely unlikely to ever return to work. Plus extremely unlikely to be able to do any kind of employment. The more Drs letters back up this the better.
I think it also helped my case that the symptoms I was mentioning to everyone, occupational health, in my ill health retirement appeal etc, were confirmed in detail by my GP my Consultant etc. I mentioned things like fatigue (extreme fatigue to the point it gives me daily severe energy impairment), my pain, brain fog etc, but also the need to pace everything, and that doing one thing (such as even very basic daily living tasks) impacted that I could not do many activities in any one go, in any one day, or in any one week etc
I think my pension appeal was given based on 2 main things
1 the long term permeance of not being able to work
... I had to try "prove" my symptoms and inability to be employed would remain in the very long term with the symptoms I had
My union rep also stated if anything my symptoms would be likely to progress and get worse, as lupus is a long term condition. Also that treatment had not made a big enough impact on my symptoms (especially fatigue) to give improvement in terms of my ability to be employed. My GP was willing to say that although hydroxychloroquine takes several months to take effect, I had been on it over 9 months by the time, and thus had a good indication and was now considered "stable" ... then mentioned up what my "stable symptoms" were
2, Whether I had any ability to do any kind of employment, not just my job at the time
.... My case was backed up on that point, as I'd tried through occupational health and my sickness capability reviews to look at all options, and everyone agreed it was impossible for me to even maintain any kind of working. I'd failed attempts to phase return, to try several times part-time hours. My manager and I knew if I was well enough to get into work and keep it up for more than a few days or weeks (phased returns showed I could not even do that) then I'd be likely well enough to do my actual job role (In my case it was not my job role causing a problem about if I could work or not, it was fatigue, energy impairment, pain etc making it virtually impossible for me to even function (especially in mornings).
Whenever I tried getting back to work I became really ill again with all my symptoms flaring up. My GP was willing to say in writing how much I needed to pace myself, and to state that following several months of giving time for treatment to take effect it was unlikely I'd get further improvement in my symptoms ... this helped my case I think
By the way don't let them use "mild lupus" as an excuse. Mild is usually medical terminology to show that you do not have organ involvement, it is not actually usually a reflection of how symptoms affect your abilities.
Do make sure your Drs know all your symptoms and how that impacts on you, as that way they can give a true reflection of any "Lupus limitations". I think my GP was initially a little reluctant to be seen as "negative" about my abilities and capabilities, until I had a good chat to them and pointed out that in terms of pension decision and social security benefits telling it ALL was actually helpful for me..... It's more depressing to have the stress about jobs and money etc than it is to learn to adapt to the "New you" and go through the acceptance needed
Hi Rockgirl I took ill health retirement many years ago from the NHS and I had a union rep to represent me do you have anything similar that you can turn to for help xx
Thanks for this. I have made my union aware of it all for sure but I only had one piece of dialogue during the initial application (phonecall with occupational health) so didn't get union involved in that.
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