Hi all, has anyone with lupus had to retire on ill health at a pretty young age?? (39y). I don’t think I will be eligible for PIP ( I have got the forms but not sure if there is any point even filling them in!) but have been thinking about I’ll health retirement.
Has anyone done this and if so roughly how long has it taken to complete and how did u go about it??
I’ve gone back to work today after 8 wks off from a flare and phased return of 4 hrs instead of 6 hrs today and I’ve come home in pain and just cried! And I’ve hardly done anything at work! How on earth am I going to manage, I only work 12 hrs a week (2 x 6 hr days! With plenty of allowances made for me by work and still can’t seem to manage!)
Thanks!
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Sara_A
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I took ill health retirement 3 years ago, but being a child of the 60s, I don't think I qualify as 'young'. Or 'pretty', come to that.
I'm not sure that there is a single answer to your specific questions. But one thing that is probably critical is to get hold of your employer policies and procedures. And a discussion with your Occ Health Service - if you have one - will probably be invaluable in explaining how things might work in your case, including likely timescales. Don't forget to involve your union rep too - it's always worth remembering that HR Departments are there to look after your employers' interests, not yours! x
I worked full time, had two small children and run a Cub Scout group, I had to give up work very suddenly at the age of 29, I am 47 now and still haven't given up hope that one day I will return to work on a part time basis.
As for PIP you should apply. Fill the form out honestly, I did it comparing a bad day with a good day with the emphasis on the bad days/ time of day. I have been awarded it, you have nothing to loose.
Yes this is what I’ve decided, I’m going to do it today I’ve got nothing to lose as u say!
As after 4 hrs work yesterday first day returning after 8 wks sick and was nothing strenuous I had to take diazepam and morphine when I got home! This is not normal this is not what normal people have to do!! X
Its a grieving process. I was medically retired at the age of 36. I got ill aged 32 and battled to stay at work. I was taking pregabalin, diazepam, paracetamol and morphine whilst at work just for the pain. Not to mention the high dose of steroids and immune suppressants.
I got home and couldn't do anything. I only worked 4 days a weeks. My rheumatologist said to me that I could either continue to work, pick up infection after infection, flare after flare and get nowhere with .y treatment. Or I could go for medical retirement and have have some level of a life.
It was a choice which was taken out of my hands by my own body. I developed abdominal serositis after doing a presentation under fluorescent lighting for three hours. I landed up in hospital and never returned to work.
It takes a long time to accept it. And councelling helped.
Be brave, fill out the form and take one step at a time.
It was 100% the correct decision for me. I have a life, not the one I wanted but I have a better life that when I was too sick to work put pushing through it.
The Money Advice Service have a helpful guide on their website about early ill health retirement that may be worth reading - moneyadviceservice.org.uk/e...
Your story is so familiar. I was diagnosed in 2014 and medically retired by 2016 aged 43 years. I had a very strenuous job. Over a six month period I found myself unable to function due to severe pain & fatigue which resulted in long periods of absence.
I was referred to Occ Health for detailed return to work assessments & plans offering the usual reduced hours, alternative duties. I was in & out of work on multiple occasions. Once I was absent on three occasions even with adjustments this triggered the absence policy to refer me to HR. Sometimes I returned only a few days before being absent again. I ended up on half pay then zero pay with SSP & ESA. I was invited to an official meeting where The management decided I was to be considered for early medical retirement as I could not attend regularly with adjustments.
From the official meeting with HR, Occ Health & managers it took six weeks to receive my official decision & this was rushed through. I had good record keeping & timely appointments by Occ Health & my GP over the previous 18 months which helped my application. Also the Consultants records were easily accessible. Luckily I was granted retirement with a pension.
I had only benefits for last six months of my employment. It took a further 3 months for first pension payment.
The loss of finance & status is devastating but I was clearly unable to continue in regular employment. It was the most stressful 2 year period of my life. I would not have survived without my benefits & bank of mum & dad to help with my mortgage & food shopping!!!
Twenty five years employment secured an award of contribution based ESA.
It takes time & is laborious but definitely worthwhile to apply for every benefit available. My GP assisted with DLA claims. I now receive DLA care & mobility & ESA. (PIP not in Northern Ireland yet). Citizens advice can help with form filling as 46 pages for one benefit application is ridiculous.
I would obtain your employers policy on absence and keep regular contact with Occ Health. The decision will likely be made for you whether or not you are able to continue regular employment.
It is a difficult time emotionally and financially & I only survived because of my mum.
Thanku so much, it’s just such a big and final decision! I love my job and trained and worked really hard to become a good nurse and to just say goodbye to that and who I am is going to be very hard if it comes to it.
But like everyone keeps telling me I have to do what is best for myself and my young family and if working just that 4 hrs yesterday meant I came home and couldn’t do anything for the kids then I just can’t carry on that way.
Sara I too was a nurse leader and loved my job so much. But only now can I accept that I am now a patient. I remember getting a steroid injection and being prescribed immunosuppressants only to rush back and try to finish my shift. I was nearly on my knees & ended up in bed for three days. A four hour shift can feel like a marathon in a lead suit.
I did not transition into life with Lupus easily. Adjusting to a new normal is life changing. It took me almost 4 years to adapt & accept my job loss. Today I am just happy if I can do both school runs,supervise homework and enjoy a short walk.
I now count myself lucky that I had enough service to the NHS to obtain a partial pension and couldn’t live without benefits & my parents help. My poor husband worked 3 jobs at one point which manifested feelings of guilt on my part but then you realise this is actually happening & I can’t change it.
My car is my lifeline to independence and I’m grateful for DLA who facilitate my car. I am also grateful that I have an excellent GP & Rheumatologist. Unfortunately a lot of Lupus patients have had a much harder journey than me.
My daughter is my focus & being there for her is my motivation. Don’t be hard on yourself. Nurses get sick too. My Consultant said to me
Of course. The amount depends on how many years service. I had almost twenty years premiums paid into my pension. My pension comes from 2 schemes : 1995 scheme & 2015 scheme. Just happened NHS altered pension scheme in 2015. I was awarded Tier 2 : A lump sum is paid which not taxable & then monthly pension payments to your account is paid.
You can access nhsbsa.nhs.uk click getting an estimate of your pension & watch a short video. There’s also an early retirement calculator but I found mine was estimated a lot lower than I actually received. Also click on NHS I’ll Health Retirement key notes which is very informative.
Compared to my monthly wage my pension is a drastic reduction in income but we are lucky to have a scheme. I would obtain pension policy document from HR, it may be online at your place of work or just email retirement department. It will give you standard calculations process but I was able to get an actual printed estimate before I made any decision. HR did support me.
At the end of the day I was sat round a table with Occ Health strongly recommending medical retirement & HR wanting to rush it through so I wasn’t without money for any longer & my Nurse Manager stating the obvious that even with adjustments I was unable to perform my duties. I suppose I wasn’t ready to hear it as it wasn’t on my terms & I wasn’t ready to leave in my own mind, but looking back it was the only solution. I now count myself lucky to have any resource of income as many Lupus patients don’t have the support I had. In simple terms I was out sick more than I was in work the last 18 months of my employment. I couldn’t provide regular service & wasn’t capable of any other nurse vacancies posts offered. I feel I made the retirement decision much more difficult on myself by not realising & accepting that it was time to go.
The positives for me are I’m at home with my daughter doing school runs, being present & have time to rest between normal daily tasks which take so much out of me. I worked every single Christmas & family event but two in twenty years so being there for two Christmas days in a row was amazing. The hardest part is acceptance. It’s A big decision, a new much slower pace of life that nurses will find hard to adapt to, but if you research retirement & are supported I would seriously consider the positives. Just because you retire doesn’t mean you can’t ever work again. It may just reduce your pension amount each month. If I felt well enough I would either have volunteered or done something completely different to nursing, I still remain hopeful that one day I will feel well enough to do something.
I hope this is of some help as I was so lost & confused two years ago & it is a big decision but do what is right for you. I really wasn’t ready to let go & leave forcing my employer to make the decision for me. Educate yourself with the process & be prepared.
You should apply for PIP as it's not means tested, and get someone to help you fill in the forms such as CAB or the Welfare Rights Officer from your local council.
Make sure you say how the lupus affects you on your worst days. You are awarded points for care and mobility.
I’m going through process at moment. I was dismissed from my job as Occupational Health Nurse ( ironic I know) in May. The ill health retirement paperwork was all completed by OH consultant, HR, my manager and me. When I hadn’t heard anything in Aug - when last monies from Work had stopped, I called NHS pensions. Basically my Trust has failed to send the paperwork!!!!! It’s now been sent 5 months too late!! I’m 48 by the way- so still classed as too young to retire. I also get top rate mobility and daily living with PIP. My lupus has damaged my lungs so very breathless. Hope this helps xxx
Hi Wolf1 , did you have any problems getting PIP , I am also a nurse with lupus and am really struggling even with part time work ! I am just desperate to lie down most of the time , am constantly fatigued , after a days work I can't even make our family meal as too tired , just feel like crying ! From the moment I get up after a sleepless painful nights NON sleep, I just long for the time to get back to lying down! I have no life at all when I am am working and on my days off am having to rest ready to face work again ! Its really no life ! Sometimes it really gets me down and all I can think of recently is seeking medical retirement! I love my work as a community psychiatric nurse / team leader but its getting so hard !
Hi Caramia I was granted medium rare pip last year- no problems. Then my condition got a lot worse with permanent damage to lungs. So told them if changes and had to re apply 🙄. Took a lot longer, with assessment at home which took 2 hours!!!! But got higher rate on both elements. It’s very difficult leaving a profession you love. Xx
I wholly understand where you are coming from as I am in the same position . I feel caught between a rock and a hard place , I struggle to work part time and increasingly am leaning towards medical retirement as my rheumatologist has advised , but financially don'y think I could survive as at 54 am too young for pension and it would be poor given years I have worked part time and paid superannuation. when my 4 boys were young I didn't pay superann as only worked 15 hrs and needed the money to raise them etc. It is also so difficult to get PIP .... its an absolutely awful benefit to get , only looks at personal care needs and mobility! High time the government reviewed this , as it is deliberatately designed to stop people getting ! Those with hidden illnesses like lupus etc and those with psychiatric illnesses are being discriminated against. let us know how you get on Sarah . Love and hugs x
I’ve spoken to my head office and the nhs pensions people and the next step would be to apply to see if I can get the ill health retirement. I am going to give it another week or so at work and see how I get onand if I still need diazepam and morphine when I get home (despite bring on50mgs slow release morphine a day anyway!! Then that will be the decision made. I can’t constantly be waiting for my partner to get home so I can take pain relief and go to bed it’s no life when u have a 2 and 5 yr old!
I will let u know! It’s so bloody hard isn’t it, I couldn’t get home quick enough thurs just to cry! X
Hey Sara-A. so sorry to hear what you're going through. Sounds like you are getting yourself on the road to having a life back.. and with that, less pain hopefully.. stress/pushing ourselves continuously is our enemy. Bonkers and frightening... but very well done for taking that decision... of course it's so very hard... but sounds incredibly necessary. I'm sitting here in pain all over with a flare as have another urine infection/on antibiotics.. and am back thinking what the hell am I going to do too as had to take the day off... but I'm generally only once a month at the mo' although all i want to do most days is get home to do nothing. It sounds so very hard for you... working in your line or work is giving non stop. I'm in Social Work and it's the same... and so intense. How you manage at all right now with two little ones as well is beyond belief. Hats off to you super woman. Can you get some counselling in somehow? To help you adjust and cement the feeling you need to be cared for too? And make plans? I've just started through work as really struggling how to deal with this vile condition and how it affects every aspect of life. and I only have a cat to care for! Got Occ Health tomorrow am so will try to get to it...Am beingn monitored. I feel like a 90 yr old at 55.5! Please let us know how you get on with all this - and all the very best. D X
My Daughter aged 31 now had to give up mainstream work. She started designing but currently can’t at mo, we applied for pip had to go through the appeals process she gets enhance care & standard mobility it did take a while but they will back pay. They key is to state how if affects your daily life like having to sit while trying to cook
a basic meal etc give as much information as possible a lot is repeated see if anyone in CAB can help fill your form in for you. The extra money has helped her just to keep up with bills & UC now top up with capability to work
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