Hi , I am 54 years old with lupus , hypothyroidism , sjogrens, IBS and osteoarthritis. I also had a brain tumour removed 18 months ago. I work 18 3/4 hours a week as a community mental health nurse / team leader for older adults. I have been struggling at work for a long time now and seem to pick up every bug thats going! I am beyond exhausted on the days I work especially. I am unable to cook when I come in from work and just want my bed, an everwhelming feeling that I need to lie down. I am on hydroxychloroquine and pregabalin, and venlafaxine. The brain fog is awful and my memory is terrible, this is really worrying my family! They say I have 'changed '. My husband is really supportive and does all the cooking nowadays. I am always in pain, its become part of who I am almost ! I desperately want to take ill health retirement now even if it means a significant drop in income ! I have the rheumatologist this friday , and my husband is going to come with me. She has already said that she would support me taking ill health retirement but I don't know how to go about it ! I have read articles online but with the brain fog and cognitive problems I am at a loss! Has anyone else gone through the process and can advise me? I have not had any hospital admissions and try not to take sick leave , though was off for a year due to my brain tumour and then 3 weeks last month. Not been well really since before christmas ( well is a strange term as actually not been 'well' for years ! ) i am just at stage now although love working with my patients and team , I feel I just can't any longer !
ill health retirement: Hi , I am 54 years old with... - LUPUS UK
ill health retirement
Hi Caramia64
😊🌿🌸🦋
I’m across the pond and apologize for being unable to advise you with the retirement process.
I feel so badly for you that I just want to send you some empathy.
Big hugs 🤗 lots of love 💗 kisses 😘 and prayers 🙏 to you dear.
I’m sooo sorry about your saga especially the brain tumor.
Please take care and best wishes for your future.
EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊
Hello caramia64
Do you work for the NHS? I took ill health retirement from the NHS 3 years ago. It proved to be a reasonably smooth process. Key points were:
- try to be clear in your own mind about the ill health retirement policy and process (here's a brief guide to the NHS policy - nhsbsa.nhs.uk/sites/default...
- as you will see, as well as your rheumy, you'll need to get your line manager, Occ Health doctor and HR involved
- you should arrange to see your Occupational Health doctor and explain your situation in any case.
- Since I'd already been on long term sick and had tried - and failed - a graded return to work, there was no opposition to my application for early retirement. With my rheumy's support too, the Occ Health medics were happy to support my application for the Tier 2 retirement option
- once you've let them know your intentions, your line manager and HR rep should arrange meetings to help you through the process.
Hope that helps, and good luck x
Hi , yes I work for the NHS. I have reading through the policy and trying to get things right in my mind which is proving difficult due to brain fog! Can I ask did you inform your line manager first ? I am not off sick just now though am really struggling. I was on phone today to a colleague and totally forgot my own phone number... just went blank ... so embarrassing! Did you involve a union rep at all ?? I have not even spoken to my Gp as tend not to go unless urgent , plus impossible to get an appointment with him !!
Are you in a union? They (your rep) can handle the process for you. I used to do that as a rep in HE.
I guess for me, the gradual build-up of sickness, sick notes etc had my manager already aware of my deteriorating health. So there were "no surprises". As things got worse, the process went something like:
- went sick for about 6 weeks with worsening symptoms
- had return-to-work discussion with line manager. Agreed that I should see Occ Health doctor as part of return-to-work schedule. Did this and made sure Occ Health doctor understood that I was struggling and in the process of being diagnosed with potentially job-threatening condition
- once back at work, my symptoms were very obvious and after another few months I had to go off sick again.
- while off this second time, seen by cardiologist, rheumy, GP and lastly, Occ Health doctor again.
- after having the diagnoses by cardio and rheumy, I told the Occ Health doctor I was considering applying for ill health retirement. She had no issue with this, and was helpful
- spoke to line manager on phone after this and she liaised with HR and they came to see me at home to discuss options and what needed to be organised for ill health retirement application
- from then on, it was easy(-ish!)
I seriously considered involving my union rep but my line manager and HR bod were actually very supportive. I think everyone could see that there was no way I could continue working so in the end I felt I could trust them to do the right thing.
Bottom line for me is to *keep communicating with everyone* starting with line manager. Get everyone you think is going to help with your application involved at an early stage, including your GP. Even if you aren't feeling "ill", its worth making an appointment to keep them part of your "team" and they won't be shocked if you suddenly turn up and ask them to support your retirement application x
Remember, you can request an Occ Health appointment yourself - that's what I did, and it does help move things along x
yeah you are right about GP , he is fully aware of my problems , so expect he will be supportive . Think I may have mentioned to him before about my thinking of ill health retirement. Will make an appointment after I finish work tomorrow. It not nice always playing catch up at work either after sick leave !! I am just at point I desperately have had enough. Will also contact my line manager too to say to her that I am struggling and will self refer to Occy health . Thank you so much , its good to talk to someone who has gone through the process! x
Hi Caramia64
I too worked for the NHS and after struggling at work I had a chat with my Rheumatologist and explained to her how hard I was finding it. She said she would support me and typed a letter explaining my health problems (SLE, Antiphospholipid Syndrome, Pulmonary Fibrosis and I had had a subarachoid three years earlier).
I also had the support of my GP. My line manager wasn't very helpful so didn't tell her initially. I then made an appointment with OHD and gave him the copy of my letter. He said he was would support it and at that point I went onto tell my line manager who then involved HR and started the ball rolling.
All the medics I spoke to said they would have supported me whilst I still wanted to work but once I said I was struggling they all wholeheartedly supported my decision to put forward retirement through ill health.
At this point I knew I had to finish work and it was a relief. The OHD suggested I go off sick until all the paper work was completed (which took about four months). I got Tier 2 retirement at 54.
Good luck
Mollie
goodness you are same age as me going for it then . I have rheumy this friday so will ask her for a letter to support it . I expect my line manager will be okay ... she barely knows me as new manager ( actually SW) as we are now integrated health and social care! She knows I have lupus though and had a brain tumour too. Its so sad your line manager wasn't good with you! Its hard enough coming to this realisation , a lot of soul searching , as I actually love or loved maybe moreso my job . ( the patients , maybe not the mountains of paperwork and burocracy !etc)
Hi. I also work for NHS and am currently going thru the process. I spoke to the pension department who advised me of the criteria and process. I then met briefly with HR and filled out the quite lengthy firm myself. They then completed the employers section bit I kept my line manager informed who was supportive and gave her cues. Part of the process is u have to be assessed by the OH Doctor and I may have to also be seen by the pensions doctor but have been told it's highly unlikely that will b required and they will usually go with the OH doctors view. .who is supportive. I have also had cancer and he told me that whilst both that and lupus come under the equality act I am more likely to be considered for the cancer diagnosis and lupus can b fluctuating and managed for some with med's. Also ask about "special classess"..depending when u started your pension u may qualify for early retirement at 55 without it affecting your pension anyway. Nurses fall in the category for this. Good luck and just OH.. your line manager.. the pensions depth and GP deal with it for u...keep in touch with us all xx
I hope it goes well for you too , I did let my job share partner know today that I was seriously considering it as really struggling. I lost my special classes as when my 4 boys were little I only worked 15 hours a week, so I opted out of paying superannuation. So stupid as at the time no-one advised me that I would lose the special classes status ! I suppose hindsight is a wonderful thing! I was gutted, as then I could have retired this year !
Hi I can totally relate!!! I am 54 and have Lupus and am really struggling to work. After repeated periods off work (and after a warning for taking time off) OH suggested at I went for IHR. I work in the Public Sector and this process has been going on since last May. I have to see the work medical officer and an independent medical officer to review. They have requested ALL my medical notes from when I was born which I think is ridiculous, all they really need is letters from my various consultants. I am still awaiting an appointment to see the Medical Officers. I have been told that I will probably get tier three, but I dont know how that will leave me financially yet. I have been off work for nine months now and would really like some sort of decision. I wish you luck with your process, I agree, the brain fog really gets in the way when trying to read up on contracts etc. Take care
i wish you too all the best , its a drawn out process for you ! why they need all your medical notes beats me ! xx
Thanks, let me know how you get on.
I've managed to get my IHR!!! I never got my appt with the Medical Officer but they just decided anyway. I still haven't heard about my pension, apparently they have to give me notice which they haven't given me yet.This has been dragging onng on since May 2018! How are you getting on?
Dear Caramia64, only you can know how badly you feel and how much of a break or full stop you need right now. The gap between 18 hour shifts and complete retirement seems huge. I am just wondering if less final options can be considered or negotiated with help such as a sabbatical followed by part time or flexible working. On the other hand, it may be better to give you a complete rest with no time pressure and the option of seeking fresh opportunities when your flare or flares are under control. Whilst work may be the very last thing on your mind right now, you are only in your early fifties and things may well change and improve. Just a few thoughts in case they are if any help, with my very special thoughts for what you are going through and my very best wishes that you get all the help you need to get the ultimate solution for you. Lily
Hey Caramia64 - So sad to read your post... I totally empathise. I am 56 next week, have Lupus (SLE - with all the fun and games that brings ie dreadful brian fog, memory issues, exhaustion, severe migraines, skin lesions and joint swelling, gut issues urg, constant infections, sever dryness of everything!), Atrial fibrillation, mod aortic regurgitation, raynauds, widespread osteoarthritis, bonkers tinnitus, Sicca, and recently diagnosed with breast cancer. Finally after 35yrs had bilateral severe bunion and hammer toe surgery (so both feet, two toes each ouch!) in November... and think only one has worked...limp.. ouch. Anyway. Im on Methotrexate and nefedipine as was allergic to hydroxychloriquie and and raft of other meds. Soon to be a lot more... and other therapies.,
So - You sound like youve hit your own private wall...(as I have for the last time) - thats significant and to be listened to. Your mind and body is crying out to you to stop putting it through so much every day - and look after YOU from now on. I am going through this myself right now. My health has got rather more complicated recently too. my line manager put forward a great referral to occ health - allowing me to read it first and then send it on with amendments. My rheumy and pain clinic also wrote recommendations which were helpful. Ive now got to send a consent form to occ health for them to contact my consultants. Im not sure what the outcome will be but all I know is I just cant work any more - everything makes me flare and I am unable to do much else other than rest and sleep tons.. My whole life has changed in the past 5 years gradually... and then I kept hitting the wall at work in past 2yrs ... and the final one was last September with constant chest pains and the severe completly debilitating migraines in meetings or anytime along with the joint seizing and utter utter exhaustion all the time leaving me in tears most days. Increasingly in the past 5 yrs just being under office lights drained the life out of me, along with the noise and trying over and over to focus but failing miserably, leaving me unable to do anything but sit there in a fug of hell. Its incredible to think how I managed for so long - and I can hear you are feeling the same. Its just not fair on you and so many others I read about on here... We are all fighters... and many in the caring profession (Im in Social Work) and we have to give our complete ALL the whole time... you have an every increasing case load and its just a case of juggling and dealing with curve balls the whole time, with high risk and intensity the whole time. Getting out the door became impossible some days so I dropped hours and worked from home (although still needing to go in for cover days and obviously to all meetings and assessments). Also into infection risky enviironments. Its just not possible for anyone in our health situation to deal with, let alone anyone getting a little older with ok health. I totally agree you must really take stock and think about what this is doing to you... you deserve to look after you now... eh? That is how I came to realise what I needed to do. Its not a case of keeping stopping work when you get to this stage - weve already tried everything and are on the right meds - I found for me anyway... as soon as I go back I am ill again.. or just cant do it at all. I am ill all the time mind, but trying to manage it.. life is very much changed - but at least Im not in tears every day, frightened in the middle of the night and bursting into tears on waking wondering how I will manage the next days needs in work.. I now worry about whether I can do the hoovering instead ;)... but that doesnt matter - doing our job does!!! Lives at stake eh - and we need to look after our own life now - and try and be there for our loved ones too. If you have a family (sadly I dont) it must be pretty hard on you.. you want to be there in their life too... not a husk of who you used to be. They think Ive always had Lupus and Id agree but have just ignored a lot of my stuff through life until I couldnt an longer abut 15(?)yrs ago. I havent been able to manage full on relationships I realise. I need to sleep and rest when I want and have complete peace and quiet... doesnt make for being a great live with partner I found :)...and now, cant do anything regular. But thats me.
Anyway, I dont know what the outcome will be after all this - for me... but Im hoping for Tier 3 (even then its financial suicide as someone put it - but there is no other option) - as my Rheumy says I wouldnt be able to work in the med to long term and hold down a job- he wrote the words = she needs to retire. Been off sick since November now. I can just about get to health appotments and hoover now my feet are a bit more healed and then... thats enough for me after 12hrs sleep. And then rest. The next 4 mths will be difficult for the other health reasons... but lookign forward to the other side of that!
Your job, I know, takes a tremendous amount of energy out of you... energy you just dont have. I felt I was actually abusing myself in the end... and not able to recognise the need to answer my health and wellbeign needs. But now I have recognised this - and so are you. Well done, if I may say so :). So please discuss with your Rheumy this week - mine was fantastic... and your GP surgery will also need to be made aware of your thoughts. Again my surgery was great about it - my nurse had been saying I should stop working for the past year every time I went for my fortnightly blood test... seeing me in varying states of exhaustion /distress and pain when I could get there. Your health teams will help you get what you need - dont hold back.... write down how working leads you to feel on the worst days for yoruo rheumy and take it with you to the appointment as my rheumy said on the day of my appointment he needs to be explicit about how the lupus affects your ability to work and generally - also..... I read a great article on Occupational Health today or something... heres the link -personneltoday.com/hr/how-t... read the bit that lists the affects on your ability to work - ie mobility, dexterity etc - this is how I knew what to write to my line manager about how it affects me.. It will be really useful for your rheumy appointment! I didnt hold back... desribe the worst days... its time to really be clear on it all and don;t feel bad about it. After the occ health team received the referral from your manager the occ health team will call you to do an interviwe on the phone or invite you in to see them.. they then write to your consultants for a report, then write their report and recommendation - and send to the pension team. Apparently its the latter that make the decision... I dont get that myself... I think its actually a panel - thats what my line manager said anyway - and I hope - how can a pension person make the decision on your ability to work due to your health?? Whatever my outcome I know this is it for me. Ive given my all and am my meds are the best they can be for my particular situation.
So, I do hope Ive not banged on too much here ;).. I suspect I have (as ever!). .Its taken me hours to write this in amongst breaks! Im so happy to help. I feel so passionately about this as Ive put myself through hell for years and only now my mind and bod has said ENOUGH! Apart from anythign else we have a duty of care to others and if we arnet on top of things then we shouldnt be trying to be in these roles. It;s too risky as we can make mistakes, miss things etc. And we are slowly killing ourselves.. Iknow thats harsh but I really feel that. It sounds like you are going to be kind to yourself too... and I wish you all the very best with all of this... remember - its your time to be looked after now. Huge hug and let us all know how you get on, if you feel able... D x
hiya , thanks a MIllion for your response, it really resonated with me , every word ! I am amazed how many of us warriors are in caring roles ! Is that the fact that we are so passionate about our jobs and give it 110% that we eventually feel burnt out emotionally and now our bodies are telling us enough is enough! The Duty Of Care now has to be for ourselves as you so rightly put. I have struggled so long now , and feel I have hit the wall as you say! I wake up on the days I am working and need 2 hours to get moving to ease the stiffness and pain , get my mind active etc I dread the days I am working and if I am on the computer for too long I feel like nodding off ! I can be with Patients and have to focus so hard to keep my focus on assessments , care etc. I love the contact with patients and their families and pride myself with still actually doing a good job , though am sure I don't get through volume of work I used to as constantly writing checklists , task lists , notes to self etc etc. I also love teaching student nurses, we have one on placement just now , but it adds to the extreme exhaustion by mid afternoon. I often feel like crying when I come in from work and really just want to go to bed. My husband is great and does the cooking , otherwise I doubt I would eat , just grab a snack! I am in bed usually by 8pm or earlier sometimes. My days off I can pace myself at least , I often have a sleep in the afternoon and find that helps me, but I can honestly say I never actually feel 'well'. I long to be the person I was ..... though that was a long time ago .Its probably 15 years , that this has been getting worse . I was only diagnosed 2 years ago after years of believing I had lupus or was developing MS. It will be financial suicide taking IHR , as I have only ever been part time since I had my family (30 + years ago ). We plan to downsize house to cut expenses , bills etc but I am so worried we will not manage . We have a flat in spain too so still really want to be able to keep it up and visit it or maybe even move there ! Then I would have the problem of the sun , but the brighter days help me when there ! Anyway now I am going on and on , but so relate to everything you said in your response ! I hope you get tier 3 , look forward to hearing . I am really nervous about my appointment tomorrow tbh , but rheumy is lovely ... i usually end up in tears !
Focus tomorrow... take your partner with you if you can... and your questions and things to say. I do hope you have found time to email them a numbered list of your symptoms and how it affects you... and along the lines of the article I sent... they will need that to get an idea of what you need................ or ask them if theyll give you an emal address to send it to.... and do let us know how you got on. Wishing you all the very best x
Hi I printed off a list of how things have been over past few months so that helped today. The rheumy is writing me a letter to support IHR . Sorry am so tired , been a long emotional day , will update properly tomorrow x
Good for you... although reading fabwheelies email below Im a little worried I put a rocket up you ;). You know where you are at... and I guess you will do the slow one step forward two step back maybe... it could become easier... but if you are already doing all you can, adjustment-wise, and are on the right meds (would love to hear the outcome of your appointment, yes) then let the support you need to keep you well come from all sides... they all have a duty to look after you too.. its a facts based situation... and all these will hopefully give you what you need one way or the other. Look forward to hearing back from you. Hope you can rest easier a little.. but I know how very very difficult all this... stage by stage.. the crazy guilt that only people who have gone through this for so long would feel (been so hard), the extreme exhausting worry on how we will manage if we cant work, making us even iller. We have to believe it will all work out in the end, as it did for fabwheelie and so many others on here. Hugs x
Hello I went through ill health retirement from the NHS when I was only 37 as it just wasn't manageable to be able to keep working ( mainly the lupus fatigue prevents me working)
I think you may have to start by having sick leave . This would give you chance to have a "breather"/ gain some energy for any stress/ "fight" ahead. Plus having sickness abscence should trigger things like sickness policies and proceedures, referral to occupational therapy, and help them start looking at things like if "reasonable adjustments" may be an option for you, as in my experience, (plus due to equality law) certain proceedures have to be followed. Also I personally think they don't look "kindly" on people "looking for medical retirement" (that's from experience I observed when I was newly in my job, from a collegue with genuine problems due to a bad back, but who usually didn't take sick leave .... I don't think initially they thought she was a "medical retirement case" / they thought she just wanted early retirement in her 50's ... which wasn't the case but allthough she did get ill health retirement she had a lot of stress over it, an initially little support from immediate management)
My personal experience was very stressful, and for me it was hard to accept that I would have to give up my career. During the time I even got dismissed due to my capability, but initailly refused the ill health retirement (so had to appeal to get the medical retirement) . In the long run it's been the best thing for my health, and I think we often "soldier on" when really for our health we are better to do something about how we spend and manage our time/ energy
A few years ago I wrote a blog like post about my experience ... here is the link to that
healthunlocked.com/lupusuk/...
Good Luck hope it sorts out for you
thanks fabwheelie - that and your blog was very helpful for all - if so daunting. Sorry you went through all that - very unfair, considering the hellof what we go through - but glad you are on the other side and doing everything you can to keep yourself as well as you can be. I am trying to do that now... have been for years with reduction in hours, sleeping all the time when off work, no life outside work to speak off as nothing left to give for it, eating the best nutrition I could, and just pushing myself to be well...but we cant make that happen if the body is so unwell... I wanted to keep on working, of course.... Im only (a week off) 56. The body makes the decision for you. But yes, you were so young... that was beyond tough..in every way. For me now, whatever happens, Ive done all I can.. as did you. Dissmisal was very shocking to read. I cant even comment on that on here. so awful you went through all of that. My email worries me a little now.. but I was blasted by a steroid infection at the time... went a little crackers ;). Think it shows.. Anyway... it was and is how I expressed my feelings about my experiende so far. All the best.
I think the hardest thing can be just accepting that truthfully you're not well enough to be in employment, and a lot of us have a strong work ethic plus society often defines people by their job. However our job should be to stay as well as we can taking into account our "limitations" and "energy impairment". I went through a grief like process post diagnosis and a lot of that was loss of my career. However I can now with hindsight truthfully say it was the best thing for me and my health. Also don't be too discouraged by my story involving the dismissal and having to appeal to actually get my pension.. as my union rep tended to think that was "just the final hurdles" and linked a lot to my young age
Hi just thought I would update everyone. I met with my team and informed them I was struggling, then self referred to OHS and spoke to my doctor. I then met with my line manager who was fully supportive. The OHS Dr was lovely, very gentle manner. I sat crying through most of appointments. The hardest thing I believe was the grief I felt of losing my job that I loved. I have been a nurse for 37 years, it defines me I suppose in many ways. I missed the contact with my Team and my patients, many that I have been seeing for years! Anyway she wrote her part of ihr form and sent it off to pensions, after I read it and agreed it was accurate. I then met with hr and a line manager, not my own as she was off sick. I however knew her so wasn't too bad. I again cried through meeting. They were really nice and kind, but to be non disciplinary dismissed on grounds of ill heath sounds awful. It felt like I was being sacked, even though I needed it 😭. They sent there paperwork part of application for ihr to pensions about 2 weeks ago now so still waiting to hear from them. I just desperately need to know what tier, if any I will get. I pray it is the higher tier 2, even though it will still be financial suicide. However I know it is necessary! It's one of the hardest things emotionally that I have had to deal with. I pray for a good outcome. I know so many of us have to eventually go through this process, but it is hard. My thoughts are with everyone that has and is going through the same. It does help to have the support of everyone on this site, it's a godsend 💕❤️
A further reply , have recieved a response from the pensions agency. They have turned me down totally for getting my pension due to ill health retirement . I am totally dumstruck !! I feel so low at the moment as a result of this. It is financial suicide for me as was dismissed from my job as a nurse with NHS on grounds of ill health. I am going to have to appeal it and try to get more evidence that they have requested, however that will need referral to various departments that I have been discharged from and referrals made to pain clinic, mental health service etc etc. It also recommends various treatments like fatigue management, CBT , formal cognitive testing etc etc . So to cap it all I am now out of a job with no income/ pension !!!! I can't get a GP apt until 7th with a GP who isn't my doctor , however I have a new doctor whom I haven't met . He is on holiday so I reckon the GP I can see at least knows me ! I also phoned rheumatology to ask for urgent review. I was given 6th September ! I can however send her the response to application for IH. Hopefully she and my GP can help provide more evidence that they are needing in case I appeal decision. This is so stressful I can't sleep or focus on anything else , something I really don't need on top of everything else I have gone through and still endure !
I want to retire due to ill health
