Hi all, I'm not one to post a lot but read so many. Just felt the need to share and see if anyone anywhere can give me ?? Not sure what but recently feel my mental health/coping skills slipping. My story in short.
I'm a qualified nurse, worked for same Trust for 26 years. I'm 48. In 2009 diagnosed with ME and Fibro. With reasonable adjustments made and ditching all other things I've managed to work 34 hrs a week. Last 2 years have been particularly difficult physically. In August 2016 I ground to a halt with full relapse of FMS. Consequently been diagnosed with osteoarthritis in multiple joints and spine, cervical spondylitis and torticolis. Depression, severe vit d deficiency,stress,acute menopausal symptoms and urination problems so I've been in a bit of a mess. Was supported by my manager,GP and Occupational health Dr and told I could no longer do my job so applied for ill health retirement. Filled in the forms, collected the medical evidence and made sure I was comprehensive in detailing rationale for being unable to perform my duties. NHS pensions have declined my application with 2 pages of crap, apparently I have to prove that I cannot do my job for the next 12 years when I will be pension age!! I thought the process was there for people like myself but it appears I was naive. I've got union support, an OT, Physio,counseller,and rheumatology appt on wed. Despite this I have had to tackle everything on my own. You guys will understand it's hard to fight for what you are entitled to when feeling so unwell. To top it off, my work will dismiss me on 20/1/17. I'm 18 months from being able to take early retirement anyway but when they take my contract away in 2 weeks I will have to wait till I'm 60 to access it! Oh and PIP are well past the deadline date for responding to my form I sent on 11/11/16 but been told tough & just have to wait for an assessment date. I will have just ESA coming in money wise. I feel like I've lost everything,grief almost and losing strength to carry on pushing.
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Julia10
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I have read your post with so much pain and sorrow and my heart truly goes out to you my friend. I was wondering if you have appealed their decision? Or you could put in a complaint about the decision to the Pension Ombudsman. I have pasted a link to their cache on ill health retirement below:
As for your benefits. You could ring Janet who is the FMA UK benefit adviser. I have pasted her contact details below. She may have an insight into what else you could claim whilst awaiting to hear about your PIP:
Benefits Helpline (033 999 0055)
I want to genuinely and sincerely wish you all the best of luck with getting this awful situation sorted out my friend, and please take care of yourself.
I'm so sorry to hear how low you feel at how you are being treated. I have no knowledge of the system to offer (with regard to pensions), but after having to leave work myself, & suffering financially for it, I sympathise whole heartedly. (I use the thyroid forum. I too, was severely vit D deficient). Seems that we often have to fight tooth and nail to get anything, & it is often the most vulnerable and deserving that are in danger of losing out, unable to tough it out to get what is rightfully theirs. If you can gather enough strength, get angry rather than sad; and then continue to fight your corner. You have worked, paid into the system & now you deserve some care for yourself. Take strength from the fact that you are worthy, having contributed positively. Don't give up. You are worth it! 🙂 I wish you every success in achieving what you need.
Hi Julia10 I feel so sorry for what they are putting you through. It's hard enough to fight back but dealing with all this on top of fibro must be horrendous. Hope you will use the info Ken has posted and not let them get away with it. My heart goes out to you angel. Lean on us and don't let them get away with what you are fully entitled to. Big soft hugs x
I wish I could be of help to you in some way...I understand what you're feeling because I went through this but in the states when I got sick and lost my job. I'm still actually having to fight to get all of my healthcare after it being now over a year since all of this started for me. Please keep fighting for what you personally need because once you stop they know they've got you where they want you...I was told on the phone by an office person that they wish I would just give up and stop annoying them. But I fought until I got the scooter I was told I would never get I know it's tiring and I know it's hard...but don't give up! With much support and prayers! Christy
I am angry and disgusted at the way you are being treated, for you to be so badly treated in any business would be terrible but for you to be treated this way by the NHS when there is indisputable medical evidence is beyond disgusting and verges on vindictive. Without even knowing you just reading the tone of your post it is so obvious that this is not a retirement you are choosing to make it is being forced on you due to circumstances beyond your control. Hardly a surprise that all that you havr been through is causing you depression, i think you would be a unique medical specimen if you were not depressed. Breifly i went through 18 months of refusal of benefits which finished with me living under a motorway fly over until the Salvation Army took me in and gave me a hostel and then helped me start fighting my case. Mine wasnt over my pension which they were happy to give me on grounds of my disease and reports from my gp and consultant it was purely my benefits which were £73 a week and left me unable to pay rent or any bills, i was able to eat and travel to job center and keep my phone going but nothing more. When i then didnt have enough funds to get a taxi my JSA was sanctioned, i told them i could not walk there or walk to a bus stop but they refused to believe me. After being homeless and then living in a hostel i eventually won at court tribunal was awarded ESA priority anf full DLA on mobility and care and £16,000 in back pay. I will never know how i got through those darkest days. Within a week of the award i was given a flat designed for a wheelchair user in a care facility as i had the DLA award and all the walls came tumbling down in days. It took me around 2 years to physically recover to any level of being able to care for myself again and 18 months to get over the nental anguish to any degree of being able to cope. Sure i got an apology but that was useless. Lets deal with the easy one, PIP issue you deadlines on when to claim how long to return the form, attending assesments etc but they are obliged to make no deadlines themselves or keep appointments, if you fail to turn up for 2 face to face appointments your claim is cancelled, if they cancel a day before and then on the day when your in their reception thats hard luck, its disgusting demoralising and grossly unfair, but that is their rules its their ball and their game, what is happening to you on that is rotten but not unusual, you just have to wait. On the retirement side hard as it is you have one bit of good fortune on your side, your union will fortunately fiight for you and win that fight without a doubt on medical grounds. It sounds to me like a protective and obstructive fund manager is digging in their heels and trying to avoid the extea costs, it is absolutely ridiculous that you have supported evidence against their decision an could retire soon anyway and they attempt to fight you. I think it is extremely unlikely they eill defend thrir position when it reaches the next tirr level of decision makers and will fold and grant your request. I feel desperately sorry you are having to tough this out but instead of internalising this at this point i think you need to dtop being the caring competant nurse and be bloody unreasonable and ANGRY at how unjustly you arr being treated. We never know how strong we are until being strong is the only thing left. You will get through this, because you have no choice and it is blatantly obvious that however long it takes you will win eventually. The strength you have found to carry on working and do your best to care for every patient can be switched off now, you have to change your personality from a carer of others to a carer finally of YOU. That i know as much as any is a very hard transition for a giving person but you have the right to allow yourself that change. Come to terms with that, with what has been alien to you, allow your mind set to change and YOU will change and find enough strength (just) to get through this. I hope that when it is all settles and you have won you eventually find the strength as i have to go back to supporting others, not through nursing but helping those less able to express themselves get what you are being denied.
Eventually my strength came because although i was unable to do what im avising you to do and change my personality, i decided i had to fight and win in the end because my GP said "if you dont fight and win you wont be in a position to stop this happening to others and if you dont Leon, then who will help them?. That was enough to renew my determination, i hope someone can find the right way to inspire you to do what i know you can do.
Hi Julia10. Sorry to hear you have been turned down for NHS pension. You must appeal with support of Occup Health Doctor whose report needs to say you are unable to work in your old job or any job until 60. I was through the horrible process myself at age 49 after working in NHS for 33 years. I don't think your contract can be terminated until sick pay ends. I got my pension but it was very emotional for me too as I did not want to give up working. Still coming to terms with retirement. I have Fibromyalgia Polymyalgia Giant Cell Arteritis Diabetes Anxiety and Depression some of which caused by long term use of steroids to treat GCA. You must not give up as you have paid into your pension for many years. You will be able to take a reduced pension from age 50. Your HR dept and Union will help you through the appeal process. Best of luck.
This whole scenario would/should be made into a documentary for tv.....it is truly an abomination of our so called "caring society"......You have obviously given so much over the years to others and this is how you get repaid! I am disgusted and angry....stop being the real you which is obviously a very caring and understanding person and get out there and shout and fight until you get what you deserve. Remember we are all hear to listen and support you so please talk to us whenever you feel nobody else is listening.....You will win in the end but you have to stay strong, the most difficult thing in the world to do when you are going through such debilitating health issues I know....but hang in there we are all rooting for you my friend...xx
What does your contract state most people are allowed to have so much time off a year with pay full or half for so long and then go into statutory sick pay .
Sorry for all the hassle you are dealing with. Have your work said why they are taking away your contract? They cannot sack you on ill health grounds if when you are off you submit sicklines. It might be worthwhile contacting your local CAB office or getting in touch with a solicitor who deals in employment law. They will both be in a position to provide expert advice.
Try to find the strength to keep fighting xx
Hi Julia really sorry to hear this and you shouldn't be penalised they just don't want to pay you. It maddens me when those who know how to 'work' the system get away with it😡
The other thing is have you had your thyroid function test done as some of the symptoms you have are the same as Fibro - reason I say this is June I was diagnosed with Fibro but apparently my thyroid wasn't working properly either so had a scan last month thankfully it was normal but as from Monday will be taking Carbimazole thought I'd swerved this - I also had low vitD and I started them last Thursday.
Take a look at Thyroid UK site will give you more information regarding thyroid and Fibromyalgia. If you haven't had bloods done for thyroid ask doc to also do TPO and TgAb plus vitamins done won't do TgAb but worth asking. Hope this helps - let me know how you get on. Take care hugsnkisses on way 😘😘😘🤗🤗🤗
It is cases such as this that make me so bl**dy angry I like you have worked all my life and have never ever claimed benefits. I served my country for over 6 years and then in 2012 I suffered a major stroke and when I tried to claim for DLA I was refused and it was only for the goodness of 2 charities who helped me appeal that I was awarded indefinite DLA and I have been though the PIP process and was thankfully awarded enhanced rate for both.I can understand how your feeling just now and it infuriates me when you hear fo your case and then see some woman on daytime tv who has nothing whatsoever wrong with her and has probably never worked a day in her life boasting that she spent 3k on her Christmas then it is really drives home how messed up this country really is.I suggest you take legal action or see your local CAB to see if they can help you to sort this whole sorry state out. I wish you all the best for the future I am just off to calm down a lot. Warm regards Ian :>))))))))
Hi Hun- me too retired from NHS in July 2016 it took 2 goes (appeal) to get it. if you would like me to give you info on what to say at an appeal then please PM me and I will help you. I would also say to you find yourself a Welfare Rights officer near by who will go thru everything you are entitled to and will gee up anything being delayed.. good luck my friend I hope you succeed.
I am in exactly the same position I have been I. The NHS for 25 years two years ago after a great deal of work related stress I went off sick and was at a later date diagnosed with ME and Fibro I went back to work after a long sickness spell on reduced hours but only manages to work 6 monthe. My ability to think talk remember mobility fatigue sickness adversion to sound smell lightcontinued to impact in to my working life. I was living to work and not the other way round my family life suffered I didn't socialise or go out ( still don't)
My husband and I had spoken about my inability to carry on but I was loathed to admit is as I loved my job. After some minor incidents of forgetting some phone messages ( as as soon as I took the message I forgot what it was about and other minor similar stuff ) I could feel my confidence going and the paranoier settings g in. I felt I wasn't ' pulling my weight, I have always run. Round like a headless chicken at work.
All this time I had support from occi health who wanted things changing in the work place for me to be able to cope.
I was coming home from work at 2 pm going to bed for three hours or so having tea which my hubby had to make going straight back to bed and sleeping 12 _13 hours a night and dragging g myself out of bed to start again . Weekends were sleeping to recharge for the week . I only worked 22 hours.!!!
I eventually decided to apply for my pensionrather I went on my own terms of be pushed and I didn't want that after so many years.
I was granted tier one pension which I am appealing
I have been told not to accept the first decision that they make as they do turn you down at times
I would appeal the decision and get touch with the pensions advisory
Go and see a specialist in chronic fatigue ( usually a rhumatologysy mine was a endochronolgyst)
I would be referred to a specialist CFS clinic and to be taught how to manage symptoms see physiology who can inform you about pacing and very low grade stretching .
Also some CBT to help with the transition to this awful illness and to help us to try and be possible (lol easier said than done )
These will all be offered as part of the CFS management programme and are the NICE guidelines for the illness
All this is pro active and helps a lot of people to COPE not a cure unfortunately.
You would of been told how long you have to appeal the decision mine was 12 month from original date
These are all thing you need to research and find d out
If I can help at all ( us nurses should stick together 💓😉) please PM me
This is so wrong on so many levels. You have been given some excellent advice and I would certainly take up any offers made by members who have been through it themselves.
Please don't give up, the pension is rightfully yours. I expect some boss has had a memo saying to make things difficult for retirees to save money, it is so unfair that it is happening to you.
Reading the other replies, it's no wonder we need to raise awareness. I'm currently on long-term sick leave since October 2016. My 6 month probation period at my new job started at the end of August 2016. I went from caring for my autistic son for 3 years to working full-time 40.25 hrs a week. Within 5 weeks I hit the wall. Financial reasons had driven me into work. At my last welfare meeting I was asked if I wanted to go back and I genuinely do. They then had the audacity to ask if I was just telling them what I wanted to hear! They said if I was worried about benefits, they could terminate my contract not on medical grounds but on performance! I was fuming as you will imagine. Our lives are a constant battle and my heart goes out to you. Stay strong, hold your head up high and be proud of what you have achieved. They can't take that away from you.
All the very best of luck with everything and I hope common sense prevails!
I was also a nurse (a&e). I had actually fought to remain at work for several years when I finally had to admit I could no longer do it. All documented as each new manager tried to get rid of me as I couldn't run majors. Am not sure if that is what stood me in good stead, or the fact I couldn't wash properly every day and within an adequate timescale. Might be worth asking for a copy of your OH notes and see what risk assessments were done ( though they now say the manager is the risk assessor).
I hope you have been using the union to the fullest. There is a injured nurse group _- does include us, where there may be other help. Also there are hardship grants. Also if you have been on sick leave you will still have your holiday entitlement, oh and severance pay of 12 weeks. Get someone at work to dig out the relevant policies. You can't be on sick leave indefinitely, but make sure it has been calculated properly, especially if they are using the Bradford system.
Unfortunately we still have to know ourselves inside out and admit what we can't do. My hardest was the washing part, even now it is still upsetting. Is there someone closish who could look over the forms for you, as sometime another may pick up something we have missed.
Whilst obviously I am no pension expert, I think what they are looking at are the ones that could possibly improve, I am not trying to be flippant but working out their objections. What they are saying is what is stopping you working in a call centre, just as an example. Just because we cannot nurse doesn't mean we cannot do other things for the tier 2 , also part-time.
Vit D deficiency - medication
Stress/depression - coping therapies
ME - has been known to improve
Menopause - getting older
Fibromyalgia - can alter with meds
Do you see what I am getting at. I actually sidelined the fibro and used my degenerative spine/ spinal stenosis, but I had also been using a scooter at work for some time. Is there a possibility they would operate on your back, thus giving other improvements,
I was lucky I was granted the pension but my spinal damage shows on plain xray. My problem was work. Having fought to stay they then made me go through hoops to leave, insisting I turn up for meetings to see what could be done to help, despite knowing there was absolutely nothing. Unfortunately became a tad hysterical at one. Having to constantly have what you can't do shoved in your face is disheartening to say the least. Then they reported me to the NMC as been unfit to practice. The NHS do not look after their own unless you might be a manager. I very much doubt other areas would put up with the unpaid overtime, missed lunch breaks just as for a start; but then we are caring, where else would a train driver be paid more than someone to look after our relatives.
Not sure if any of that helps but you need to think what they are looking for,
I suffered the same problem in 1999 and I was dismissed from local government employment due to incapability in 2001. I am now 53 and been on incapacity benefit and now esa, sorry to say that things don't get any better. I am now being told I need to attend work related interviews. I am trying to get put in the work related group. I know what your going through, the pain the fatigue the depression I am worse now than I was all those years ago. Sorry to be the voice of doom but the system does not always work for people like you and me, but don't give up , fight for what you know you deserve , we only get one life and we have to live it the best way we can . There is plenty of help and Adivce on this forum, someone will be able to help you . Hope it all works out for you 🙏🏾
Hello Julia10,,,are you in a trade union???, if so ask them to help you with maybe getting your job changed to something that you can do, while you wait for the next 18 months,,,please don't let the system get you out of a job you have loved and just need such a short time to make a great difference to your retirement,,,,ask the pip offices to send a new claims pack,,and when they ask, and they will,,give them a good reason why you forgot to send then firstpack back,,,good luck and I will cross my fingers for you,,,,ttfn from Karen.
Hi Julia10 , I'm so sorry to hear what your going thru.I live in the US but I have read so many simular stories that it's heart breaking.I am disabled and it took me 5 years to get my disability started but the way things are over here I wasn't surprised. You have a very demanding job and I have enough sense to know your not capable of doing it with u our illnesses. I truly wish you the very best. Please don't lose hope as we will always have that and nobody can take that from us.Be blessed and we are always here for you if you need someone . Peck.🐤
Thankyou all for your thoughts,advice and just plain old goodness. I'm trying to stay strong. Think I will feel better after seeing the Rhumatologist but just hope he cares. The one thing that I've noticed since being a patient instead of the nurse is that most of the clinicians I've dealt with are so demoralised that the job just becomes mechanical , unfortunately I have not come across many caring attitudes so far, more like,,,here comes another one that wants something . We will see, trying not to be cynical!!
Thanks again to you all that bothered to respond xx
My experience is the same with the medical profession I feel they feel I am wasting their time it get the point where you are loathed to go and see them and therefore put off going. Keep you chin up love and fight the good fight you are only asking for what you have paid into all these years much love 💓💖💗💜💕
I know how y fill I have fibarmalger and osteoarthritis. on top of that I have breathing problems. I all so have a iaters hernear. in all so suffer from stress and depression.along with angsierte.
I get so tied that I can't get out of bed some times and my legs completely giveout.i can't do every day things with out being in pain and tiredness. Some times I fall asleep on the tolit.or any were that I'm sitting.i get so low .
It's got that bad that I have a life line a stailift.i even have something to raise my bed.i have to use a wheel chair as I can't walk far I'm 53 years old and was working fallbtime w this happens.my back gets so painfull.I.know how y fill and were y coming from.
people look at y and stair as thay have know clue as fibarmalger and osteoarthritis don't show on the out side.only in the inside.i had a knee operation that went wrong.
I some times try to do my best and try and let it not get tome.But some times that's not easy and I just in to tears and ask why me.
so if y need to speak then I am hear y are not alone remberthat. y are just the same person y was before it happens 2 y don't let others tell y any different.
I know this is an old post and wondered how you got on, hopefully you went on to appeal and won!
I have just been turned down after giving in lots of supporting docs and support from my occi health Dr...I have union and pip standard rate but they came out with this rubbish of if I'm managed in a biopsychosocial way I should be able to work as they know fibro waxes and wanes......I am furious as I tried everything to sta y in work...eventually the fibro fog did me in and the fatigue and pain of severe tmjd where I have to take top dose of coc odamol just to function....
I will appeal so wish me luck......the sad thing is we don't even want to give up our jobs 😣😣
Hi, well after 16 months in the process & appealing I won my NHS IHR Tier 2 pension which is great for me & was the best option but the NHS IHR process itself has left me broken.
The best argument for a qualified nurse to use is NMC “you have a legal duty to be well in yourself in order to provide nursing care” & this is no longer possible. Your health directly & naturally affects your nursing duties, abilities & clinical judgements. You have a lifelong & debilitating illness,have to endure their symptoms & the strong medication/ analgesia relief needed to manage. I had to give up my PIN & used that as evidence.
I threw everything at them, I got my Gp to refer me everywhere, wrote 10 page argument like it was a uni assignment & left them no where to go. I hassled everyone & got supporting letters/reports. Added in NMC requirements/ standards.
Good luck friend. Hope this helps. It’s a nightmare that we have to go through this in the first place.
My doc has just agreed to support my application for ill health retirement and will fill remainder of form in and send off. It didn’t ask for any supporting evidence - is this when you appeal?
No I sent in medical evidence & supporting letters initially. They write back & try to justify with (weak) reasons why you can’t have it, then when you appeal you should find arguments for each of their reasons why you should have it. You should ask all your medical professionals to write worst case scenario. & it’s permanence.
Thanks for replying. Looks like I have started off wrong by not sending any evidence with initial form. It is with my doc now for completion. I will wait until I get refusal letter and appeal with evidence then. It was bad enough with ESA - I got work related ESA awarded. I didn’t appeal as I didn’t feel strong enough to go through it at time. Not sure strong enough now to go through this but ESA runs out soon so either way need to do something!
Glad you finally got your Tier 2 pension awarded. Only what you deserve!
Hi linda, I feel your pain & wish you well. Only you can do it!! Think of you & your family’s future, you are entitled to IHR but like PIP & ESA they usually say no initially but if you push on you can get it.
It’s so hard but once you get evidence ( the correct words on paper)you can appeal ESA(I got into the support group one which you should to) I appealed PIP & got it, & pension.
In the aftermath yes I’m more secure but it caused me my mental health. I’m taking one day at a time now.
If I can help in anyway, pls pm me. I’ve been where you are & YOU have to push on huni.
I got ill in 2010 after a lifting accident at work, york NHS 15 years service, from the accident I got a tear in my spine that causes me to now have muscle jerks and fits still to the day, its called spinal myoclonus. Fibro and cfs. Since then oesteo has joined the list along with tarlov cyst on spine, ibs and bile reflux. Mine was turned down because .... breath deeply theres no evidence that either fibro or cfs are life long so they could not give me a pension. This was upheld at appeal.
I have got esa every time and pip my first time so im recognised how ill I am but my hosp thinks I need to proove that my fibro and cfs are life long and I can’t
It’s been few years but still hurts so bad. I paid into it from day one in case this happened. To add salt to the wound it happened because of them. I wish id sued them, actually talking to a solicitor at the moment to try get help with both im past angry being left like this.
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I know it's tiring and I know it's hard...but don't give up! With much support and prayers! Christy
No ill health retirement given!
Nhs I’ll health retirement 
Ill health retirement from the NHS
