Panicking : Hi I've had RA for 20 years. Recently I am... - NRAS

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Panicking

Angjoplin
Angjoplin

Hi

I've had RA for 20 years. Recently I am in constant severe pain and xrays have shown severe degenerative change in both elbows with near complete loss of joint space. I'm really struggling to do simple tasks.

I'm working full time, which isn't helping but I can't afford not to work. I'm panicking and stressing about how I'm going to live if I have to stop working. I checked on universal credit and because of my previous tax year earnings I wouldn't be entitled to a thing. I couldn't afford to live even if I went part time.

Has anyone been in a similar situation?

Thanks

60 Replies
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Have you had a word with the CAB....they will be able to tell you what sort of benefits you might be able receive.

Angjoplin
Angjoplin
in reply to AgedCrone

Thanks for the reply but they are only open while I'm at work. There isn't one I could get to in my lunch hour either.

AgedCrone
AgedCrone
in reply to Angjoplin

Have tried telephoning? They often have evening or weekend appointments.

Angjoplin
Angjoplin
in reply to AgedCrone

No, I just went on the opening times online. Worth a call to find out. Thanks

Hi Angjoplin, if you can’t get to the CAB the NRAS has a helpline and they also do some good publications around work and issues arising from it and also about benefits.

nras.org.uk/publications

I’m assuming your employer knows you have RA? Have you discussed the problems you are having with them?

Do keep talking things through with us as there are many of us who have been in your situation and we will help where we can.

Are you claiming PIP?

Sorry for all the questions 😊

Angjoplin
Angjoplin
in reply to KittyJ

It's a weird one with my employer. I only see him every 4 months or so and every time he forgets I have RA. He's not supportive of hospital visits making me take holiday or work back the time etc. So looking to him for support is pretty pointless, unless it benefited him.

I've not claimed PIP mainly because of all the stuff in the media but I'm thinking of giving it a go. I can still walk on good days so I think it might be a waste of time.

Thanks

Pippy25
Pippy25
in reply to Angjoplin

As I understand you can claim PIP and work, but always best to seek help from CAB, Welfare Rights or similar and they can have a look at what benefits you may be entitled to and help assist you in filling in the forms. Good luck with whatever you decide and take care.

KittyJ
KittyJ
in reply to Angjoplin

It’s always worth trying Angjoplin. That’s exactly what I thought but I was surprised when I started to think about it in detail, all the things I struggle to do or use aids to do. I didn’t get the mobility part ( didn’t expect to as I too can walk albeit in agony) You may be surprised 😊🤞🏻

Have you tried PIP?

I am thinking about it. I'm rather put off by the whole idea being so hard and stressful. And intrusive. I've heard so many bad stories.

J1707
J1707
in reply to Angjoplin

Your right it is rather stressful it really is designed to fail.... I was originally rejected but I fought and I got it. If there is a next time for me I will not stress because I know I’m entitled.

Preparation is the key.Collect all your medical letters from your appointments, list all your medications and every medic you see, podiatrist, physio, clinic nurse Gp etc a letter of support from them all. Ask all of them to include the fact you are in pain every day and the difficulties you encounter and talk about YOUR WORST DAYS THIS IS VERY IMPORTANT!!! It will be based on the days you really struggle. From Getting dressed. Lifting heavy things , brushing your hair,difficulty travelling socialising and how disabling fatigue is. I know it’s easy for me to say but if you go in with the mind set that at least I tried and had no expectations at least you won’t be disappointed. I honestly believe the tide is turning where pip is concerned more and more people with RD are getting it.

As for work..... I had a an employer with no compassion where my illness is concerned and it drags you down.(she has now had to medically retire..., love karma😁) my new employers wife is a nurse and he had obviously been talking to her is the the total opposite and can honestly say I feel healthier for it. Can you record your meetings with him as evidence and go to HR or your union ? ( if your a member) I wish you all the luck so next year will be easier

Angjoplin
Angjoplin
in reply to J1707

Thanks for the advice. I'll start photocopying all letters etc .

How do you go on about getting letters from doctors? Did you just write to the hospital and ask?

Thanks

J1707
J1707
in reply to Angjoplin

I contacted my Clinic nurse she did a personal statement. Your Gp should have a copy of any letters that are sent to them eg physio, Rheumatologist ( I git my chiropractor to do a statement)that have been sent after appointments if haven’t got them also your Gp can do a report not on just your repeat prescriptions but any acute medications go back at least 2 years so they can see things are getting worse.

Jeppy
Jeppy
in reply to J1707

May I mention too that if had xrays these are available for free l

J1707
J1707
in reply to Jeppy

Good idea

Jeppy
Jeppy
in reply to J1707

Yes they are free in request. One thing that is very good service

Recorder500L
Recorder500L
in reply to Jeppy

Not too sure that x-rays are free, I had to pay £25 for mine together with MRI scans - check with your Consultant's Secretary; however well worth the cost. Take care.

KittyJ
KittyJ
in reply to Recorder500L

They are free, you can request copies of all your hospital records and xrays. I got just the xrays and they were sent to me on a disc.

Jeppy
Jeppy
in reply to Recorder500L

They were free?

KittyJ
KittyJ
in reply to Jeppy

Yes they were. Under GDPR you are entitled to access your health records. I filled a form out on my hospitals website and sent it off. They have to provide them within a month. I would assume it’s the same for every hospital.

Recorder500L
Recorder500L
in reply to Jeppy

Thank you for replying to me, I paid £25 for the MRI scans that I had done on my feet - it was emailed to me with a copy of the report and comments with a lot of scans of my feet from every imaginable angle which is now saved on my computer. Take Care.

Jeppy
Jeppy
in reply to Recorder500L

Maybe it depends on area ?

KittyJ
KittyJ
in reply to Jeppy

If you google ‘your hospital name request records’ it should come up with how to do it. That’s what I did.

Jeppy
Jeppy
in reply to KittyJ

...I phoned upmthe hospital and they put me through to the dept and gave me an email address to put in the request

Crystal66
Crystal66
in reply to J1707

Absolutely j1707.I was about to say the same.I was in a similar position,I could take no more.Stress causes your condition to worsten,Until my GP changed all that.I had copies of every examination and especially with my Govt agency(proof of all my illnesses) as Governments have a tendency of losing these documents.Saves being given the run around. So don’t lose hope Angjoplin.

J1707
J1707
in reply to Angjoplin

Sorry meant to say I would have an appointment with your Gp face to face tell him honestly how bad things are. I told mine my world was shrinking as my social life and hobbies were now almost impossible and even my working hours were reduced and I was struggling. Hadn’t realised how bad things were until I started talking ended up crying ( I’m not a crier) it made him realise that things had come to a head. He did a real good letter.

Angjoplin
Angjoplin
in reply to J1707

I'm not a crier but I totally broke down today at the hospital in front of the nurse. So embarrassed.

J1707
J1707
in reply to Angjoplin

That proves how bad things are again ask nurse to but this in the letter. I did a personal statement with my pip so I could really explain how it effects me mentally not just physically also the effect it had on my family. Answering just the questions for me was too clinical . So I wrote a separately from my heart for my appeal Did it help? Wish I had done it when I first applied as my second interview ( over the phone very unusual) did refer back to this state several times.

Deeb2908
Deeb2908
in reply to Angjoplin

Angjoplin I cried 2 weeks ago with the nurse as was just over the whole process and she just made me realise I needed to do something within work. I am now doing 4 days a week 6hr days in theory. Some days I struggle but I have to say it does feel slightly easier on the body.

Think about what you can cope with body/money and then try to work out how you can adapt.

It is hard and crying is OK too! x

Angjoplin
Angjoplin
in reply to Deeb2908

I'd love to work 4 days. Just can't afford it atm. Maybe if I got pip it could offset. I'll have to see.

Deeb2908
Deeb2908
in reply to Angjoplin

My work is paying the balance I am missing with sick pay as I cannot afford to lose a day a week at the moment,

Angjoplin
Angjoplin
in reply to Deeb2908

That is really good of them. You must have a lovely boss. 😊

Deeb2908
Deeb2908
in reply to Angjoplin

it is what legally in our contracts they have to do so ................actually having a tough time with my boss at the moment but hey x

Angjoplin
Angjoplin
in reply to Deeb2908

Sorry. I'm sure karma will bite your boss on the butt.

J1707
J1707
in reply to Deeb2908

He’s not biding by your contract if he makes you do extra hours

I fortunately was accepted for both mobility and care enhanced, first time applying.

Hi yes it is hard in this situation , hope you can get it sorted and help from your work ,and maybe in future from this dreadfull universal credit as well ,the pip is 2 different payments you can get 1 or the other or both care or mobility.the mobility would be upto 50 meters in your situation ,the care you may get as you can get it for just using aids as well ,you can have a good read at if you want ,Google ,pip form completion and appeals disabled view uk, and if you think you may get pip just phone up for forms it is or can be straight forward

Angjoplin
Angjoplin
in reply to Ajay575

Thanks. I'll Google those. 😊

Sorry to hear this 😢

I hope you get relief real soon xx

Have you seen an elbow surgeon to discuss elbow replacements?

Angjoplin
Angjoplin
in reply to BoneyC

No. I have asked for a referral but the nurse warned me that it's unlikely as I'm only 40. It wont last long enough and future replacements don't work as well.

BoneyC
BoneyC
in reply to Angjoplin

It's a shame the nurse wasn't more positive. I've been seeing an elbow and shoulder surgeon since 1998 (dx 1971 age 6) and every time we discuss the latest options (as things keep improving), but it's me that keeps putting it off. This year he told me he could help straighten my elbows (as they are banana shaped) which he hasn't promised before. Good luck with your choices.

Angjoplin
Angjoplin
in reply to BoneyC

Thanks. I thought they just didn't do it because the replacements only lasted 10 years. I'll go for an appointment though to discuss my options. More information is always better.

It's definitely worth trying for PIP, I live off my ESA not working due to numerous health reasons & every 4 weeks my PIP pays for something that I probably would struggle otherwise to pay or be able to do. It's not a lot but it does help & I used to get standard mobility but that was taken away last year due to some changes in law so lost that by 2 points:( This year I was very ill & one of the complications was meningitis....most people who recover do so with minimal impact but for me it has worsened my memory & concentration so I asked for help with the form from my local CAB but I had to be referred by Herts Help where I live but it was a godsend. It will usually take 2 appointments as they do go through the questions first to see that you will likely pass the criteria but in saying that they did advise which I knew anyway that 60% are automatic fails & then when you go to tribunal 75% win (I believe they do this in the hope that so many will not fight to go to tribunal for many reasons & many don't have the support to do this so it's a big savings for them but in saying that most of us have worked for many years & rightly should have the support when we need it.) So do try to get it as it will make a difference & if you can reduce your hours you will so notice the difference in your health for it. Good luck & Happy New Year to you & hope it is a brighter year for you:).

Angjoplin
Angjoplin
in reply to Coco54

I've heard about people been denied. As you say, it's all a money saving exercise from the government. I've even heard of the assessors been given bonus for the number of people they turn down. One lady was turned down because she picked up her handbag.

I know my health and mental wellbeing would improve greatly if I could reduce my hours. We'll see...

J1707
J1707
in reply to Angjoplin

It’s true what you say about assessors. Mine said that I was nicely dressed. No mention that the dress had nobbuttons or zip. Also I bent down to grab my dog and walked it out to the garden. 1) my dog is a greyhound who’s head is above my hip level, 2) I just put my hand in her head,3) 3 steps the the door 3 steps to the chair.. All this irrelevant as I told her I was having a good day..,there were so many errors in the report. I dissected each section and counter argued her report, 18 A4 pages in total. Yes a lot of work but I had proof, all the letters from medics to back me up.

One tip I will give is proof of postage or recorded delivery 3 times they claimed my applications were late or lost and each time I could tell them the day and time and signature of the person on arrival of forms. Pays to be one step a head.

Don’t be put off. Good luck

Ajay575
Ajay575
in reply to J1707

Mines said ,looked well and tee total ?,little behold one of my rumatologist reports said those exact words on a letter

Angjoplin
Angjoplin
in reply to J1707

So your more likely to get it if you look scruffy? What a joke.

J1707
J1707
in reply to Angjoplin

Yes .... although it’s not supposed to be means tested. my assessor commentated on what a nice house it was and very clean. My husband was there he said he cleaned it and there was more than just his wife living there. He made several statements none of which she reported . All I put my argument in my appeal said.

Next time I’ve a cunning plan...... Not going to bathe for 3 months have food all over me dirty dishes left around my house.(my dog is very gentle) Have my dads dog which is barmy jump all over them....and to top it off I might just smell of wee 😜😂😂😂😁

Angjoplin
Angjoplin
in reply to J1707

Sounds like a plan. Lol. 😁

Ajay575
Ajay575
in reply to Coco54

Hi reading the post, just out of interest did you appeal your mobility it is never good to hear ,just incase I thought you could not lose out on standard mobility by 2 points, only enhanced ,.p.s just incase there was errors in your decision sometimes dwp make honest mistakes tallying the points

J1707
J1707
in reply to Ajay575

Any little thing helps in mobility application. In my telephone interview ( convinced this person was a doctor ) asked if toileting was a problem. I said no I don’t need help. He replied.please think do you have any problems getting on the toilet at anytime. I said at night when I need the toilet I’m very stiff and hold on to the radiator to lower my self down and again to get back up. He said that brings up to the right amount of points for mobility. Never would have thought this was something I needed to report it was just something I did.

Ajay575
Ajay575
in reply to J1707

Ha ha .just shows you ,best get everything down 2 points hear and there , so much I never put down will learn from mistakes ,we all learn through tips etc ,hopefullybit gets a bit easier

Coco54
Coco54
in reply to Ajay575

No I didn't they said the usual & if you appeal you could lose it all & at the time due my health deteriorating I didn't have the energy to fight on my own & had no one to support me so just accepted what they said but this time if it comes back against will definitely be fighting. Happy New Year to you:)

Ajay575
Ajay575
in reply to Coco54

Hi it is understandable it is common and to fight it can be to stressfull was only thinking of the points, used to handle paper work for it,hopefully next time all goes well for you ,thanks for the new year ,I'll. You too hope it went well

Coco54
Coco54
in reply to Ajay575

Thank you & just trying not to stress over this time which doesn't do us any favours.

Pip form are very long and off-putting, it's best to get someone who knows how to fill them in to help you, the cab if you've no one else, I sympathise with you as I know longer work but was in severe pain all night for months in 2014 and had to sleep during the day, severe pain totally grabs your attention, it stopped me concentrating on anything when it happened in evening or day, you're doing amazingly to keep working. You don't say what you do, do you enjoy your job,?

I'm a website manager for an ecommerce site. I wouldn't go so far as to say I enjoy it. It pays the bills and for a holiday a year. I really really don't want to stop working. I know it sounds silly but the thought of not being able to afford to get my nails done makes me want to cry. My independence means a lot to me.

I don't blame you, wasn't suggesting that you did, hope you get pip sorted out and are in less pain soon

When I had to stop worked with Angina, COPD and severe OA - I was given £70 a week to play my rent and being my older uni kids lived with me I got no support, You could apply to ESA ? Depending on housing you could get CT help and rent help unless you buy, depending on savings... Have you got PIP? get proper help from CA or WR. it's hard I know but you can't by law be left destitute.

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