Vasculitis UK
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GPA sufferer seeking financial advice

Hi,

I am 49 years old and have been battling with GPA for 2 and a half years now and despite all the steroids, 16 pulses cyclophosphamide, 8 lots of retuximab and all of the other drugs, operations etc I am still ANCA positive. My consultant at Addenbrookes is still confident that remission can be achieved so I can only hope that she is right.

Anyway, the point of my post is to ask if there are any others out there who have experience of trying to arrange their finances whilst being unable to work due to this disease. Up until now, I have been employed but on extended sick leave. Paid for the first 6 months then my employers income protection policy took over and their insurers paid me a percentage of my salary for 2 years. This period will end in January 2018 when it is either return to my substantive role or they will terminate my contract of employment. Returning to work is not an option with the symptoms I have plus the risks of flaring due to exposure to infections, stress etc so it looks like termination. Having never been unemployed and having no experience of claiming any kind of benefits apart from PIP which the hospital advised me to do, I am a bit lost as to how I am going to manage. I believe that there is something called contribution based ESA which I intend to apply for but as my wife works and earns more than the limit laid down by DWP (about 50p per year I think it is), so I think that I am ineligible for any of the other benefits as they are means tested.

I have contributed to several workplace and a private pension over the years and although they do not amount to a fortune (I estimate about £170,000 in total split between 4 different companies), the money is inaccessible to me until minimum of 55+ years old. About half the money is with Aviva who are the providers of the pension for my current (although soon to be ex) employer. Has anyone had any experience of asking to access pension funds early on grounds of ill health? Any advice or experiences from people in this kind of situation will be gratefully received.

Thanks.

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My husband claimed his Occupational pension when he was 55 due to GPA. You need to ring the pension funds. There are 2 ESA's, one contribution based and one income. We are applying for the contribution based one and that is not means tested. You just have to have the correct amount of NI payments for the previous 2 years. Good luck.

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Hi Nicholson27,

I lost my job due to ill health aged 50 and 8 months later was successful in accessing my pension due to ill health.

I was in the NHS scheme, my GP filled in the forms with my input ( I gave him a list of the things I could and couldn't do ).

I don't know if private schemes are different but in public pension schemes there are 2 levels of ill health retirement, 1 which is when you can't do your current job and tier 2 which recognises that you aren't fit for any employment.

Depending on the level of PIP you receive that plus ESA may be enough ( there are 2 ESA groups, you need to be placed in the Support group otherwise the benefit only lasts for 1 yr ). If you manage to claim your pension then I think ESA rates are adjusted.

As Nadine says I too think the best thing to do is contact the pension provider, the Citizens advice bureau may be able to help as well. Are you a memeber of a union as they are good for advice in these situations?

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Hi Keyes,

Thanks for the info. Not in a union as cancelled membership of TGWU years ago so no help from there. Will ring pension company to see what they say and apply for ESA and just see what happens. Went to citizens advice but to be honest they weren’t an awful lot of use beyond suggesting ESA. My wife works for NHS as an A&E senior sister and is in UNISON who I think offer advise for their members and families so might be able to get some advice second hand from there. Worth asking I suppose.

Anyway, thanks again for the help.

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Found this, don't know if it helps?

pensionsadvisoryservice.org...

I suspect that private pension fund rules will differ from scheme to scheme whereas public pension rules are usually fairly similar.

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I have been unable to work for 7 years and only receive £450 pip a month . Needless to say as a self employed person who worked hard and paid tax and ni I am almost bankrupt and live from hand to mouth .... desperately need financial advice as I am seriously depressed and have been to very dark places as I am worth more to my family dead than alive .

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Thanks for your reply. Will be able to access my pension if I get to 55 but need the money now so will give them a ring. Doesn’t hurt to ask. Will also be applying for contributions based ESA as I have been paying NI contributions for donkeys years so would hope that will be ok. Thanks again for the advice and hope your husband is doing ok.

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PIP and contribution based ESA are your only options as far as benefits are concerned.

You should be eligible for the ESA as you're unable to work, but PIP has noting to do with being fit for work. It replaced Disability Living Allowance. It is split into 2 components- Mobility and Care. The walking distance is very harsh, so you would need to be virtually unable to walk to qualify. The care component will be payable if you cannot care for yourself (wash, dress, cook, feed, etc)

Good luck. The forms are worded in such a way that you can appear much healthier than you are. The main thing to consider when answering is, if you can reliably and safely repeat the action a "reasonable" amount of times.

For example there may be a question such as "Can you raise your hand above your head to put a hat on?" Personally, I can do this once, but can not keep my hands in that position long enough to wash my hair. So I would explain this and hope they would see that washing your hair is a necessity and as I require help, I should score "points" for this particular question.

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Hi Gilders,

Thanks for your reply. I have been through the PIP assessment forms and it’s a good point you make about how they are worded. The advice that I have been given by several health professionals is to keep very much in mind how you are when at your worst with whatever condition or symptoms you have as you cannot be reassessed every time you have a bad patch. As in my case GPA is capable of flaring at any time and also the likelihood of picking up an infection are so high, both of which would have a serious impact on my being able to get about and to look after myself, my answers are based accordingly.

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You need help filling ESA form. Take a look at benefitsandwork. co. uk. If you join the cost is about £15 you can download help sheets. The current rate of ESA+ support group allowance is £109 a week. They re. asses the claim about every 18 months.

Good luck.

Wishing you remission from the horrible symptoms.

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Hi KirstyW1999

Thanks for your advice and good wishes. I will certainly have a look as you suggest as they never make these forms easy so any help will be good.

Best wishes

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I had to go back to work in August for the same reason. I was off for 2 1/2 years. The company i work for changed our terms and conditions 2 months before i had my flare.

I had the insurance cover but, i had to claim EESA as they deducted it from my claim. When they said they would stop it i had the right to appeal if i won i would still get the insurance but, i would no longer be employed by the company. So not sure if this is the same for you.

I went back to work on a 12 week phased return after having a meeting with an Occupational Health Doctor, before i returned it did take them a few weeks to find out if i would be entitled to sick pay as i was the first person coming back to work under the new scheme and as luck would have it i was entitled to it from day one. I was also owed 45 days holiday... i am now off due to this till 2nd January and if i don't feel well i know i have up to 6 months pay.

Good luck with everything i hope you get a good conclusion. XXX

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Hi Greenkit

Your story certainly sounds similar to mine. The insurance policy that is paying me a percentage of my salary is only for a set period of 24 months so will stop next month. My employer is organising a capability review meeting with me to determine if I willing be able to resume my full time substantive role which was managing a nationwide HGV delivery fleet for a large manufacturer. This is quite a pressurised and stressful job and to be honest is way beyond my capabilities as I am now. They are not willing to consider a reduced hours / part time alternative. I have seen their OH doctor and his opinion off the record was that with what I have got, I shouldn’t be considering working at all.

Is hard to take as I’ve never been out of work in my life and before the GPA struck, hadn’t even had a sick day for 20+ years but I suppose I just have to treat it as yet another unpleasant symptom of this disease. There seems to be no shortage of them.

Will explore the ESA claim option and speak to pension company to see if early claim due to ill health is possible. Luckily my wife works so still have one wage coming in but is a shock to the system having been used to two particularly coming up to Xmas.

Thanks for your help and I wish you all the best and hope you remain flare free.

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That is hard that they won't reduce your hours. It just goes to prove we are all just a number, loyalty doesn't come into work nowadays.

I too have worked all my life, full time for 44 years (another 5 years before i retire if i make it LOL!!!!) so i am able to claim my private pension but, it is not enough to pack up work, it will be enough to be able to reduce my hours which i will be looking at doing in January.

I am still not fully flare free, still on a load of tablets but, i was lucky enough to be accepted for the FAB-V research trial at the QE Birmingham and it has really changed my life as fatigue was the worst part of GPA for me. If it wasnt for that i would have to have packed up work.

Do what i am doing and get an Euro Lottery Ticket tonight. XX

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Greenkit, that's really interesting about the FAB- V study and the difference that it is making to your fatigue.

Could you share some of the strategies you have learnt?

So pleased to hear it's making a difference.

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It was all down to really basic exercise and walking.

I was lucky to be on the full trial so was given a Fitbit and had to keep a diary, every week it was handed in at my 1-2-1 sessions on a Tuesday then i got a phone call on Thursday to discuss the next step. That really helped as it gave me the motive to keep going.

When i started in April 2017 i had the persistent cough and could only walk short distances as i got out of breath, my neighbour used to call me Darth Vader.

I was started on 500/1000 steps every day which was tough but. i persevered and made sure there were stopping points so i could sit down. Every week it was increased by 500 steps and at week 2 i was given exercises to do at home on top of the steps, i couldn't manage it every day but i tried and there was no pressure on me if i couldnt .

I had asked to get rid of the weight around my stomach from the lovely steroids. (I had put 3 stone on during the 2 years.) I got to 5500 steps and have stuck at that i do more most days but, as long as i get to 5500 i feel happy.

The session always started on the treadmill (i had never been on one before) 10 minutes at first as i puffed so much, at the end of the trial i was doing 45 minutes and chatting away to the trainer.

One of the exercises was just to bend at the waist and touch my toes (x10) which was impossible but, after a week i was able to do it. Much to my amazement.

Then i had stand up squats (x10) i do them at the kitchen sink, one leg stands (x10 each leg) and arm stretches with a 1kg weight (x10 each arm).

After 12 weeks i had lost 3 inches from my waist, lost over a stone and best of all i could breath and talk without coughing so much.

I had my check up with my consultant (City Hospital Birmingham) last week and he was really impressed in the difference with me (my lung x-ray came back clear) so much so, he doesnt want to see me for 6 months. if i have a problem i can always email him.

If you are close enough to the QE Birmingham (they pay travel expenses, i had a bus pass so never claimed) try to get on it as i know they are still looking and it is all confidential only your Dr and GPA/Vasculitis Consultant are informed.

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I was interested in that study but my fatigue is not now severe enough! When first diagnosed I could not climb a flight of stairs without a rest! (That was less than 2 months after being reasonably fit). Now, 8 years on, I have retired and can walk up to about 8 miles over the hills without too much difficulty. Usually a bit tired afterwards!

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Hi Greenkit,

Thank you.

I don't have GPA and successfully manage my fatigue with as much exercise as I can tolerate ( usually walking and cycling ). I am very interested in measures like these which patients feel they have control over and can potentially lead to massive improvements.

Would you consider writing an article for the Vasculitis UK newsletter about your experience? Personal experiences from patients who have the disease themselves are always very helpful, sometimes I feel that it's easy to get stuck in a rut and think that there is nothing we can do to help ourselves.

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Hi Keyes, I can write an article, i wished everyone could take part in the trial that needed help.

I will start work on it. May take me a few days as backspace is my favourite key LOL XX

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That's great, thank you. There is no hurry as the next newsletter isn't due till Spring 2018.

My e mail address is lynn@vasculitis.org.uk

Best wishes

Lynn

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Make sure that you don'the resign. If your employer terminates your employment then he will probably need to pay you notice. It all adds up.

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Hi AmyS1,

I agree that resigning would not be a good move. Not sure about notice as they are proposing to conduct the meeting under their capability review process where if the outcome is that I am considered incapable of my full normal duties then it will be termination. I’m not an expert in this field by a long way but I thought that employers were required to make ‘reasonable adjustments’ in an effort to avoid dismissal rather than just go straight for termination. Again I’m not sure but I think that GPA is covered under the equalities act on grounds of disability. Seem to remember wording along the lines of it being a terminal condition as they are supposed to discount the effects of treatment.

Don’t know if anyone in the group has any expertise in these complicated legal things?

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I know of someone in a very similar situation. Yes vasculiitis is covered by DDA disability Act now known as the Equality act. However an employer would be expected to make reasonance adjustments. However if you are too ill to work. They will probably terminate your contract but they would be expected to pay all outstanding annual leave and pay you in lieu of notice. Hope this is helpful although I appreciate how hard it is.

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Your advice is certainly helpful and thanks for taking the time to reply.

All the best.

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I too have never been unemployed!! I had my first flare a year ago in October. I was on short-term disability for 3 months then got approved for long term disability which lasts until I go back to work (I’m not) or until I turn 65 (I’m 57). My long term disability insurance required me to apply for SSID. I got approved the first time. I also have WEG 🙏🏻

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Hi Danerd1960,

Thanks for your reply. I have applied now for ESA but have not been assessed yet to know if they will say I am fit for work or not so don’t know how long they will pay me for. Not that it’s enough to live on anyway but every little helps.

All the best

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I hope you get some relief soon!! If you are on Facebook I belong to Vasculitis Wellness Group- there are a lot of folks with experience!!

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Hi Nicholson 27,

I have Wegners and have been employed and unemployed throughout my time with this, over 30+ years now, I took my pension on medical grounds in the end, my husband who also at that time had a very good job had no baring on me claiming ESA and PIP, he has since had 2 strokes and has retired on medical grounds, he is 51 and I’m 49, so make application for everything you can, I also worked for Citizens Advice for years and they will advise and help you make application for everything you may be entitled to, good luck with everything.

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Hi Wendy-m

Thanks for your reply. It is good to know that someone the same age as me (49) has managed to prize money from a pension company early on ill health grounds as that is my next phone call to Aviva to try to do the same. What is more interesting is that you are still (hopefully) going strong after 30 years of Wegeners. Good on you. I very much hope to follow your example.

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I know that my doctors have told me that they assume that I will never become ANCA negative. I’m 16 and was diagnosed with MPA 3 Year’s ago. I reached pain free and drug free remission once, but my ANCA was still positive and I relapsed about two months later.

When it comes to money, I’m quite unsure about that entire situation but I am fearful of my future. My parents do good financially and don’t struggle too much with all my expenses, but I worry about what I’m going to do when I’m on my own.

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Hi this was a while ago now so not sure you are on here but I am 22 and just been diagnosed with GPA around 5 weeks ago, I think you will be okay at your age do not worry about finances focus on getting yourself happier and healthier for the future. That is the main thing you need to do first.

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How do you stay so positive? Just yesterday I found my self researching mortality rates and life expectancies. I was diagnosed at almost four years ago now and I don’t think that there has been a day in the last twoish years that I haven’t spent time researching treatments, stats, doctors, etc. I don’t think there has ever been a waking hour that I haven’t thought about vasculitis. It controls my every move. I cry just thinking about it, so even my best friend doesn’t really know I’m sick. How do you do it?

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When your diagnosed with a life long thing that can be life threatening how can you not think about it every day? I think about it from the moment I wake up I'm on 8 lots of medication a day how can I not think about i and still waiting for my toe to fall off as my disease got so bad it caused my toe to die, how your feeling is completely normal and if your not getting better or feeling better your world starts to break down even more but you've got to remember your going through this because your strong enough to handle it.. That's why you will get through it.

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Thanks for that. I’ve really been in need of some positive thoughts lately!

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Your disease is very very similar to mine and it is really hard to come to terms with as its something that is life threatening.. And because your so unwell anyway you don't feel strong enough to handle things especially your illness but that and worry put together will make you get flare ups because it's stress on your body but you can and you will get better in time.

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It doesn’t help that I am always stressed out about everything either. I am a worrier and I think it started when I got sick. I worry about stupid things and about relapsing. I feel like whenever I’m going through a really hard time emotionally, my vasculitis symptoms increase tremendously. For example, I was stressed about an exam at school, so my joints hurt so much that I needed help getting dressed and walking. That is my every day.

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I honestly understand exactly how you feel you feel its so hard not to worry and it's everything in your mind that's probably part of why you body is going through the disease because of stress but you've got to try and handle it, your going through A Lot especially as a 16 year old it's okay to be so worried youve had a very serious disease that could have been fatal.. But managing the stress is a massive part of the disease that can trigger it off badly so try and keep it under control.

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Another thing that’s hard is that a see nephrology, rheumatology, endocrinology, pain management, pulmonologist, vascular, immunology, allergy, orthopedics, sports medicine, and physically therapy and each other these physicians is pediatric. I’ll be seventeen in a few weeks so I’ve been consumed in researching new adult doctors. I kind of struggle with trusting doctors because I had an incident with a doctor that was taking the lead on me, but had never actually seen vasculitis in person. She mistreated me for over two years before sending me somewhere else, and I’ve had a lot of health problems as a result. I spent two and a half years on prednisone, most of the time close to 60mg per day.

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Wow. Being on such a high dose of steroids at such a young age is a massive thing and I completely understand what you mean for years nobody listened to me that prescribed me anti depressant tablets saying I had depression.. I was admitted three times to hospital before they made a diagnosis which led to the disease going into my kidney and causing my foot to start dying which is going to result in a loss of one of my toes just waiting for that to come off atm.. I got the treatment I needeed because finally I had a really good doctor. Try and have faith in the doctors you have now even though you have had a bad experience the doctors that are treating you now know what they are doing especially now you have a diagnosis.

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Before I was diagnosed, I spent about six months in so much pain that I ended up quitting sports, missing school, and couldn’t walk. I was wrongfully diagnosed with lupus, arthritis, bone problems, and a whole bunch on non realistic things. I used just want a diagnosis so bad; I thought that that was what I needed most, until I actually got mine. I feel like nothing has changed and my physicians are just as confused now.

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The joint and muscle pain is so painful when it flares up really bad I can't walk at all, I know because it's been a long journey if you got a diagnosis straight away maybe but you've got through it for so long so the pain and everything mentally has already drained you I think..but honestly now you have a diagnosis it is the start of something new. When did you get a diagnosis?

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July 6, 2014. It was two weeks after my thirteenth birthday

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I’m unsure about the financial stuff because I was thirteen when diagnosed, sixteen now. I just wanted to let you know that I am ANCA postitve, and I reached remission once and never had a negative ANCA. My doctors believe that my ANCA of my MPO will always be positive. We actually stopped checking them in monthly blood work because everyone read too much into how high the ANCA became.

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