I have SLE, I have tried several of the medications
Hydroxychloroquine, Methotrexate and Azathioprine which is affecting my liver. I have the brain fog, confusion and memory loss. I really need to pace my self, I also have left bundle branch block and my heart races so fast until I rest and with Lupus on top this is exasperated especially with major fatigue. I continuously double check everything and still get things mixed up. I’ve worked for the civil service for 19 years and worked extremely hard and now I’ve got this disease which affects every aspect of my life to the point I don’t feel safe leaving the house.
I drag my body around and it very debilitating. I still try to get into work but it’s more and more difficult. I’m trying to get my ill health retirement pension but they seam to thing I will get better and be able to work. They go on probability. I can’t do it anymore and need to get my pension just to survive/ bills food. I’ve never claimed benefits always worked. I’m now 58 and this is my life that they play with.
Can anyone share similar experience or help in any way which would be really appreciated and forever thankful.
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Willow-Popi
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I don’t know much about ill health retirement but I can relate to your post so much. I feel similar and don’t know how much longer I can keep on working. I’ve had nearly 20 years service and been able to continue working without sick leave until this past year. I’m limping through setting cement trying to work. I would like to apply for ill health retirement too.
But back to you. Who is assuming you might get better? Have you been sent to Occupational Health? Have you spoken to your union? Have you contacted ACAS for advice?
I’m so sorry to hear of your suffering but can understand. Not only do we suffer daily but can’t even get what we’re entitled to.
Pensions Department want me to prove that I will not be able to return to work before state pension age. I can’t manage my daily activities just looking after my self, I need help.
Rheumatologist will try to manage my condition but all I get is further side affects.
I have had occi health assessments. Unions have been supportive.
hello, sorry to read this and sounds like me last year! Worked for years and the last one was just so much a challenge until I took ill health retirement , the first step was HR and request an Occupation Health review initially this helped me to modify by working conditions and I managed another year. But with my OH report and support of my GP and Union I applied and got ill. health pension . Don’t want to bore you with whole process but OH and if you happen to have a union rep we’re a god send! One thing I remember clearly I had to initiate the requests for both OH and potential early retirement , HR could not make the suggestion! Not sure this helps 😊
Happy you got yours sorted so difficult when you suffer daily and continuously. Hopefully life is more manageable for you without the added pressure of work etc
Ex civil servant here who got ill health retirement. If you are a member of a union, get them involved. If you aren’t, it’s best to join! Are HR involved? They should be. Have you had any reasonable adjustments and are they monitored? Is Occupational Health involved?
I had all these steps in place, and very much did not want to retire but it came to a point where the stress of trying to work was detrimental to my health and I applied. Occupational Health wanted to give the final sign off, but it was just a bureaucratic box ticking exercise by then.
Sorry if this is a bit clipped in style. I’ve had no heating or hot water for some time and my fingers don’t like it! I hope it all works out for you.
I’ve had all the reasonable adjustments which was difficult also. Finally got there after two years of asking. Occi Assessment after Occi assessment all saying the same. Breaking down at work dragging my body in I didn’t know what to do for the best I was so confused and couldn’t cope.
I’m so very sorry and, unfortunately, I’ve seen similar things happen. I don’t know in which part of the civil service you work. I cringe at what I saw in my time. I may be without heating in a cold house but my blood is boiling!
Employers are still bound by the Equality Rights Act 2010 and my understanding is that they cannot discriminate against an employee with a disability, which you have. They can’t put you up for redundancy or refuse retirement easily. Unfortunately some managers either don’t understand or want to shuffle off someone they see as a “problem “.
You are definitely doing what you can. TBH my case wasn’t as straightforward as I first implied and took some fighting because once I realised it was just too much for me they were not that keen on early retirement.
I won’t go into much more detail about my case here, but happy to message privately if it helps. I’m on your side at least x
I’m terribly sorry for your circumstances. Unfortunately the Equalities Act 2010 is not enough. It satisfy’s the definition of disability contained in the Equality Act. However, this is a legal determination and only an adjudicating body can provide a definite opinion.
All help is welcome so happy for you to message privately.
No I’ve not been given a reason. It’s frightening I feel like I’m waiting for a heart attack isn’t it awful. No they don’t investigate further from my experience.
Echoing what others have said - I got my retirement agreed with the help of my rheumatology consultant report, psychologist test results that showed reduced working memory, and occ health report, at the age of 50 (15 years of lupus). I I was a GP. I had reduced hours etc a few years before.
My Rheumatologist is saying we don’t do reports use the letters they have already sent. I am seeing a private Dr hopefully he will be able to help with the report. I think I may need to also have a psychologist test as I know it’s effecting my mind, memory etc. I had all reasonable adjustments, reduced hrs but still I can’t manage.
Willow-Popi, think my rheumatologist had to complete a report for the NHS pensions retirement application but with my memory I really can’t remember now as it was 10 years ago. It took months of nagging through her secretary to get it done! I’m so sorry, I do remember how stressful the whole process was, however. Perhaps the civil service has a standard application form demanding a similar report? Good luck.
I’m trying to get my ill health retirement pension but they seam to thing I will get better and be able to work. They go on probability.
What do you mean when you say you are trying to get IHR. What have you done so far and what stage are you at? What do you mean by “probability”?
1. The Civil Service will have a policy for how to go about getting ill health retirement. You need to get hold of the policy and make yourself familiar with it so you can follow its procedures.
2. If you are not part of a union, join one now and tell them what you need from them.
3. Remember and remind them that your conditions fall under the Equality Act and they therefore have to treat you accordingly. Make a list of the reasonable adjustments you need to help you work, including reduced hours and working from home, most ill health retirement processes take time and you need to survive in the mean time.
4. Take that list to HR and ask for a meeting along with your manager and your union rep. NEVER attend any meeting from now on without your rep. Discuss your list and negotiate reasonable steps to help you move forward. Expect to be sent to OH.
5. Ask your most trusted and supportive medical professionals, be they GP or consultants - the more the merrier, to write reports for you explaining your conditions and how they are affecting you. Importantly get them to state why taking medical retirement is important and that your conditions are NOT likely to change.
It may look daunting but the process is there for people like you, have courage and take this final step to get a more balanced life.
Thank you this is all very good advice. I’m seeing a private consultant next week to try and get a medical report. It’s very daunting but when you’re not functioning as most people and can’t think as it effected your mind it’s not easy. I have to read things over and over and make sure I have explained all best I can. I constantly make notes as reminders. Let’s pray we all get the outcomes we deserve 🙏☺️
I know what your going through as I went through it myself with a large blue chip corporation who tried to sack me for capability so I took them to tribunal. I ended up with a retirement pension and a settlement agreement so I’m not allowed to elaborate even though the legal standing of those agreements are now questionable!
All I will say is that it is hugely stressful and no doubt contributed to my health status. That’s why I say you should get your ducks in a row sooner rather than later.
So sorry you're going through all this. I know how it feels.
Thankfully you're with the Civil Service so there are some measures in place to support you. And you've been given some excellent advice by the others so far. Reasonable adjustments to support you in your work. Occupational heath report. Speaking with the union. And most important, speaking with your manager.
What I don't unfortunately understand is how the ill health retirement pension works or how it is calculated. If you are successful in getting it, would you get a full pension? Part pension? I know the Civil service offer a good pension, so hopefully the latter.
They offer a two tier system a lower tier and a higher tier. It all goes on probability and evidence supplied so you get a lower tier or upper tier up to your normal retirement age. Getting a report expressing your severity of the disease and how it will affect gaining future employment appears to be difficult. The Rheumatologist doesn’t want to say that regardless of the severity of the disease.
So you don't get your full pension early, but something to see you through till such time? Maybe calculated on what you would've been earning had you not been ill?
"If you have a permanent illness that will not improve until state benefit age 67 then you got try for ill Health Retirement "
But even if you do get ill health retirement at say 58, would your full pension commence? Or would you receive benefits of some kind up until your retirement age?
I can completely empathize with you. I have tried all the same meds, and I have all the symptoms you described, plus weight gain. I have learned to pace myself and, most of all, rest. It was a relief to get my benefits a few years ago. I am in the USA and worked 15 hours a week from home once I was on benefits. I hope everything works out for you. Until it does, take good care and be gentle with yourself.
I have had so much sick and signed off. Ended up in hospital several times. Final warnings etc it’s been a nightmare journey for many years as for many of us. 🙂
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