British Liver Trust

JSA, give me a break

Hi.

Sorry about this , just need to offload as no-one else to talk to.

Long story short about 4 months ago i received a letter tucked in between Farmfoods and Domino's pizza leaflets informing me that i need to go see my GP as i now have Hepatitis C (i had never even heard of Hep C at this point ) so went straight to Google then rang the Doctors to find out how i could have got it as i have never touched drugs in my life..not even a spliff , he was a locum doctor and i'd never seen him before but he said i must have 'used' at some point ! . I then arranged to see my usual doctor and asked him to go back through my blood test history and he was alarmed to find that the Dermatology Dept at the hospital had detected Hep C in me in 2011 but decided not to tell me. Since then i have opened an inquiry through PALS which is still on-going. I demanded a face to face meeting with the consultant that detected the hep c to ask her why she hadn't informed me in 2011 as i could have made life changes then !!! and her reply was I'm really really sorry but i must have forgot ?!!!....Yesterday after being told i now have suspected Cirrhosis of the liver as well as chronic Psoriatic arthritis and depression i received a phone call from ESA who took great delight in telling me i don't qualify and must report to the jobcentre immediately and start looking for work . I'm still shellshocked from the initial letter but now have to try and put it out of my mind and look for work. i'm waiting to go for Ednoscopy and other tests and really don't need this lot on my back right now. Sorry for the rant.

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I forgot to add i'll be 60 in January and have been told the most likely time i got Hep C was in 1980 from a tattooist parlour.

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Hi, sorry to hear about your diagnosis and dwp stress (they are *runts), can you not appeal the decision? I was also diagnosed with hep c out of the blue and like you I have never used drugs or even had a tattoo so it was a total surprise to me, I put it down to blood treatment I had as a baby as thats the only way I feel I could of caught it but I'm finding that impossible to prove as all my medical records have gone missing but I do know that my blood was under investigation since the age of 7 so have no doubt about it really. I'm now 12 months post treatment and all looks good as far as hep c in concerned and I was also told that I was close to cirrhosis but since treatment my fibro scan results have been reading better and it looks like my liver is improving, I have another scan next week so fingers crossed its good news. Good luck with everything, have you called the Hep C trust folk, they can advise you on everything including benefits x

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Hi Tess,

Thanks, I'm really pleased to read you are improving, made my miserable morning much more happier for reading that.

The guy from ESA said 'i imagine you'll be appealing ' ?..i said too right !

I just haven't got a clue what to do next , it was the advisor at the jobcentre that told me to apply for ESA in the first place as she knew i wasn't fit to go back to work.

Thanks again for the advice i'm going to ring Hep C trust now and talk to them again , i have spoken to them a few times since i was diagnosed but not recently ...cheers x

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yeh I swear they do that just to temporarily make the unemployment figures look better even tho they know its close to impossible to be awarded esa these days. I think theres someone called Sam at the hep c trust place who will able to advise you re appealing. Dont let the b*stards grind you down.

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I dont think you will get ESA now it will be PIP contact a carers organisation near you ie scope, age concern. citizens advice. to help get what you are entitled to and fill in the forms. PALS will have the contact numbers.

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I got a letter threw the post today off a nurse who wanted me in for a chat about my results so I phoned and got seen an hour ago the nurse told me what I had and I got up and walked out with the nurse chasing but I just said I can't do this today so close to my father's birthday who died now am at a loss what now ..next step plz

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Hello Frazzle1, welcome to the forum. Was this you visiting the nurse for a set of medical results? If so what did she say or didn't you really take it in? I am very much hoping this wasn't a benefits appointment you ran out of (just you've posted on a thread about benefits)

If it was a medical appointment perhaps after the holidays when you are in a better state of mind you should phone the nurse or doctors practice up and make an appointment. Apologise about your abrupt departure, explain circumstances and perhaps start afresh. If you have a friend or loved one who can attend with you that might be helpful as support plus two pairs of ears are often better than one when dealing with all the 'med speak'.

If you have further questions it might be helpful to start your own thread rather than your post being hidden on this one about benefits.

Best wishes, Katie

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Hi,

If you would like to talk about this situation and potential treatment options, our helpline is open 10am-3pm on 0800 652 7330.

As you quite rightly say, you are absoutely justified to pursue the way you were informed about your diagnosis with PALS and perhaps consider legal representation.

As the other followers have said, the Hep C Trust can be contacted with regards to specific advice regarding benefits.

We hope that you find this forum a supportive and hopeful place to visit,

Warm wishes,

BLT admin

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Thanks, I've just spoken to Hep C trust but unfortunately they don't have a benefits advisor there at this time but once again i was given some good advice regarding other matters.

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Try Citizen's Advice Bureau or your local council who should have a Welfare Rights Officer who can help you with the appeal.

Don't let them beat you. Appeal it all the way.

All the best, Katie x

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Hi.

Use the British liver trust for national guidance. Look locally for c.a.b. or other local organisations who can help you ask for a reconsideration of the esa decision. Get as much medical evidence about how you're symptoms affect you and your inability to do things regularly, and in a sustainable way to work. If the reconsideration doesn't work send in an appeal. Just make sure you don't hit any time problems over challenging decisions. Get guidance and support on the challenging benefits decisions process.

With regard to concerns over your not being given the medical information. Check with pals but also find out who the specific advocacy service is in your area for health issues.

You may also wish to consider legal support, but check potential financial charges and whether or not you qualify for legal aid.

Best of luck.

G.

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Thanks. i rang the Liver trust and she gave me some useful numbers and advice, i've just rang PALS to see how the investigation into my complaint was going and she said they posted a letter out to me yesterday which should arrive either today or tomorrow. Cheers Ayrshirek i'll ring Welfare rights today...thanks all.

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Cheers carllovatt ,i'll give Age Concern a ring too...sorry for late reply my head's all over the place atm.

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I can't imagine anyone detecting hep c and not telling you because that is very serious. I don't blame you for being upset. Someone is responsible for what has happened to you. I am not sure if there is anyway to get it besides drugs. Keep us informed on what is happening. Good luck

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The fact that it suddenly showed up on my GP's computer screen after 6 years and him not knowing anything about it is what baffles me.

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Had you been to the hospital recently for anything or GP blood test ?

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Yes i started on the Zepatier/ribavirin tabs a fortnight ago ,had bloods done on weds and she rang on friday to say all is going well and the virus is clearing fast.

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A bit late to this one but,

'see my usual doctor and asked him to go back through my blood test history and he was alarmed to find that the Dermatology Dept at the hospital had detected Hep C in me in 2011 but decided not to tell me'

From my understanding and I may be wrong, it is up to your primary care provider (your GP) to explain these things to you. I get copies now of all correspondence and consultants always write to my GP giving them the details of my results and my GP never goes through it with me. Your GP is responsible for your health and their head is on the block. I would be asking your GP, if he had it on the computer, why did he not call you in and follow it up.

I would advise anyone else reading this to ask all consultants to copy you in on any letters/reports/test/scans to your GP. It's a bit of an eye opener sometimes, what is said.

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I was there when he went through my test history on his computer, He held his hands up and promised me that this was the first time he'd seen it in my records, he said this has only recently been added ?...this is why i demanded the meeting with the consultant and when i asked why it has suddenly appeared she blamed it on computer technology !!!...i'm still trying to get to the bottom of it .

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You're not kidding RHGB as I just got 5 huge envelopes and an A4 one which have copies of every single comment, op, tests, basically my entire records for £50... from when I moved here around 1991!

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I got mine from the hospitals (I've not looked at GP records yet) when I went into hospital in 2014 with liver failure and a haemorrhagic stroke at the same time. It truly is amazing what happens and what you are not told about and some of the comments may shock you. Medical handwriting is atrocious and takes time to read.

It is well worth the investment. Although they are meant to be free, as you have found out, there is an admin charge. Mine was £25 for the first hospital I stayed at from 4:00pm to 4:00am and £50 for the hospital I spent nearly two months at. So in my experience it will nearly always be £50. Knowing what I know, I would pay for my records every time.

Have fun reading them and maybe come back and tell us some of the interesting bits.

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It's certainly been an eye opener even reading a few scrawled notes so far, what a mess, no wonder they ask you what brings you in each time no one can write properly! I can access my medical GP notes on my phone I don't seem to have any under 10 🙄

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Just out of interest, what made you apply for your patient records?

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Hi RHGB, firstly because I wanted to ensure they had taken Cirrhosis off my PMH and current issues.. it certainly doesn't show on my GP records but they know I questioned the diagnosis years ago.

Secondly, I am trying to put a time line together as best I can because my memory is shocking (I think that is PTSD related) and I wanted to see, historically, when I fell apart particularly because i think there is a link between those strange dips and high high stress levels. I have no idea where my tipping point is still but want to do everything I can to ensure it doesn't happen again.

Equipped now with the knowledge that PTSD can come back with a vengeance and anxiety disorder has always been there I HAVE to ensure I never again fall back on alcohol. A lady I saw as well as the alcohol worker all felt that it is not alcoholism but instead it's something I turned to when completely out of my 'window of tolerance' I seem to function better if there is a sudden crisis probably because I am always on red alert anyway, it's like the danger switch is always on and it's very draining.

Take care,

Michelle x

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i'm off to present myself to those lovely people at the job centre this morning to apply for JSA , can't wait . No doubt they'll have some great ideas and exciting new college courses for me to attend !...to which of course i'm eternally grateful to them for, there's nothing like starting the morning by talking to an ignorant arrogant pathetic robot.

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Oh Newblue I relate, I am on EESA now, it was originally ESA, but it is not as strict about work as JSA and payable for a year. I have never claimed for anything but was advised by those helping me as they didn't want me to lunch into work, I can't anyway as I can't concentrate long or totally forget the simplest of things.

I think it's important you ask them how a job will fit around a) your symptoms and b) appointments.. flexibility is needed and I would love to think there's a wonderful flexible employer who will accommodate that but as they won't know you from Adam I don't see how..have you told your GP?

I would appeal! The guy that worked with me as well as a family support worker from our council were the ones that told me not to go to the 'health interview' alone but I did, as I had no one to go with me.. despite the fact I sat there shaking and crying I never will forget the question 'do you ever feel tearful'.... drrrrrrr I don't remember anything else.

Best of luck,

Michelle xx

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Hi Michelle i will be asking for an appeal form this morning, i received the decision makers letter on Saturday, just like you i had to go alone as had no-one else..it says he got here by himself, was clean and tidy, could hold a conversation ,could raise his hands above his head but he was obviously in some distress as he was shaking and his facial expressions kept changing ?...there was no mention of The liver cirrhosis, no mention of my 13 year anxiety problems or the 5 counsellors that diagnosed my Depression or my 20 year psoriatic arthritis for which i take biologic drugs each month. The liver nurse at the hossie has told me the last thing my liver needs now is any more stress as it is already struggling with everything else. Thing is i really want to get back to work but they just wont give me time to recover...the b*stards are relentless.

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Oh that's not good, I got so cross at their decision I rang them and told them not to pay me but those helping at the time told me to ring back and retract that. I am frustrated at not working but I am self employed, have been for years. I could never apply for employed positions long before this because I was running about after my Mum and another family member, both elderly so as well as a young child I needed to be available and felt I would be far too unreliable to employ.

Good luck let's hope you get more joy this time, let us know how you get on.

Michelle x

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It really is frustrating wanting to get back to work but knowing that you can't , i know the feeling very well . i really hope things work out good for you soon ...here's to a better year next year x

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How did you get on newblue?

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I appealed but they didn't change the decision, on the plus side the hep c treatment has worked great and there's no sign of virus now , bloods are good and no signs of inflammation so am now able to take Pregabalin for anxiety which the doc wouldn't let me have until my liver improved. thanks again for all your support.

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Oh that's good newblue, my ESA ends in December and that's that I haven't got the energy to fight! Good news about your Hep C I'm glad for you, I finally saw my consultant last Tuesday and with all results to hand he said "your bilirubin was 250 in January, now under 20 and with all other results good there is no significant damage...see you in 6 months! Just for reassurance :)

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Great news , things are finally looking up at last , take care x

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Thanks newblue sorry for delay I've a chest infection and a flare up of ulcerative colitis, first time in over 10 years so I've not been feeling very sociable and my memory is always poop...

Michelle xx

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Did you have any symptoms with hep c sorry I new here

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I feel your pain I am a nurse yours is a case of medical negligence starting with the dermatologist and gp. I have been back to my gp saw two different gps and they knew NOTHING about hepc treatment or management hep c is the largest viral epidemic in the world the U.K. needs to drag itself into the 21st century . I am sorry for what you have been going through

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Thanks. I talked to a solicitor but she didn't seem to think i have much of a case until i get my next fibroscan results in March and they show i have any long term damage ?...I showed her all the evidence of negligence and even the apology letter from the Hospital but she still didn't think there's a case.

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Find a new solicitor

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I think you 're right

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