New menber help advice please

orthoman
orthoman Member Posts: 14
edited 11. Jan 2019, 07:46 in Say Hello Archive
Hi all,
Just thought I,ll take the opportunity to introduce myself to the community.

I,m 54 and have suffered with psoriatic arthritis since I was 15 years old. It’s been a long time with many downs and a few ups in life. I,m going through a really difficult time at present and any advice will be very welcome.

I started working at 17 in the nhs and I’ve worked all my life 37 years now with only limited time off. This is important to me as I felt that work was my link to an outside life and it kept me from focusing too much on the pain of my condition.

My fingers and joints in both hands are very deformed and my right hand is now so bad I can barely open it.

My feet and toes likewise and I go for podiatry every 6-8weeks as I have specialist insoles and I cannot put my feet mainly my right one on the ground as the bones of my toes have all fused together and I went for years walking on totally bruised feet until the specialist rheumatology podiatrist created custom insoles for me.

I have also spent probably 25 years plus walking on the side of my feet to alleviate the pain so it’s caused problems in my knees, hips and also lower back. I have used crutches on occasions but could not use a walking stick due to the fact I have severe wrist and elbow pain.

At this moment in time after a flare up that has lasted around a year and a half I have to use a walking stick even though it hurts my elbows and wrists, and my wrists and hands are so bad that I’ve had to apply for I’ll health retirement from the nhs.

Treatment wise I was started on the usual pain meds and anti inflammatories which caused me to have stomach issues and gastric erosions. I was also on gold injections for a period but didn’t get on well with them.

I was having major issues with my psoriasis so the dermatologist suggested methotrexate which the rheumatologist agreed with. I was on this for a good number of years but still felt it only really helped my skin as my arthritis was still causing me issues.

After many liver biopsies and having problems with high lfts they took me off the methotrexate. I had also tried sulphasalazine prior to this but had a severe allergic reaction to it.

Next up for me was biologic treatment and I was put on entanercept which cleared my skin but I still seemed to have flare ups of my arthritis. I was one of the first on this in my area and unfortunately developed a malignant tumour which was diagnosed as anal cancer. I was immediately taken off the entanercept and had to do with only pain meds which in my life seems to be dihydrocodeine. I also had many many local and general steroid injections during my many flare ups in knees ankles shoulders hands wrists etc.

I had another flare up and was put on leflunamide which didn’t last long for me as I had stomach issue whilst on it. After a major flare up the rheumatologist has said that as I was 5 years cancer free after I had my tumour removed surgically I would need to decide whether to go back on biologic treatment as my flare up was so bad. We decided to try cosentyx and I have been on that since April this year.

My skin is totally clear but I have lots of pain in my joints in hands and feet, knees, hips and lower back. My wrists are also very painful. I have tried pain management clinics, other pain relief, ie tramadoll, gabapentin, and nefopam but always come back to my dihydrocodeine, during the last 27 years I was also diagnosed with gout as well as diabetes type 2 in 2004.

In 1994 I was having great difficulties walking and with personal care ie putting creams on etc and trouble with buttons, opening jars and getting in and out of the bath etc

I applied for dla and was given the high rate for mobility and the low rate for personal care both were given for life and it was supported by a doctors statement saying my condition was chronic and degenerative. I still continued to work as I was able to manage my workload as I pleased and developed ways of working round my disabilities.

I have also remained very embarrassed about my health conditions probably due to the young age I became ill and have had no psychological help at all over the years.

To top it all I have suffered greatly from fatigue and was finding it difficult to work and eventually condensed my hours into 4 days so that I could have a 3 day weekend to try to recover for work.

Obviously over the last 24 years since 1994 my condition has fluctuated as psoriatic arthritis tends to do. Unfortunately for me in March 2016 I was called in by the dwp and accused of benefit fraud, they had some video of me walking unaided and although I know that I was walking in the side of my feet and had just got my new insoles they are not interested.

I have never had a physical assessment by dwp and they have said I owe them all their money back which now totals 73k they have also decided to prosecute me and I was up in court to hear charges of fraud against me, I was suspended from my job and have had to face an investigatory hearing and a disciplinary but have become so ill that I have now applied for I’ll health retrial.

Dwp have not seen any of my medical records which as you can imagine are very substantial when I told my doctor about it he actually laughed and said you,re on biologics it’ll be ok when the humans get involved. I asked for a manual reconsideration and have the tribunal on the 16th of january 2019.

I have a solicitor on the go but to summarise I am very concerned as to how I can prove how my condition has adversely affected me over the years. I have just plodded in and tried to do my best even when I was very ill with my health conditions.

This is my reward for pushing through the pain barriers and I’m now facing court. Having to pay all the money back as well as losing my job as I have been told my contract will finish on31st march even if my Ill health retirement is refused. This was not pointed out to me at my meeting but was in the last sentence of the letter sent out to me.

I just wanted to point out to people that the benefit system is fine but they absolutely crush you if they go against you. I have not been assessed physically and none of my medical people can believe they are doing this to me. Has anyone out there got any pointers for the tribunal or anything else I can do. I have also been knocked back for legal aid so unless I find some money will not be able to defend myself in court when that comes this year.
I am now on anti depressants and seeing a counsellor but really feel I have no hope for the future. My psoriatic arthritis and diabetes should be enough to cope with but this on top of the pain is way too much.

Thanks for reading.

Comments

  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Hello

    Welcome to the forum. The member of this forum are friendly, helpful, empathetic, will offer light relief, support, offer you advice and suggestions and will answer any of your problems or queries if they have experienced them.

    There are several people on here who have psoriatic arthritis and will help answer any problems. In regard to your problems with the dwp have you contacted the CAB to help and advise you. They have people who are trained in these matters. Have you got letters from your various consultants and your GP giving details of your long standing health conditions. Versus Arthritis have a freephone helpline, 0800 520 0520 who you could ring and chat over the problems you are having. The lines are open Monday to Friday.

    I am one of the moderation team and we all have one or more of the Arthritis 'hanger ons' or care for family with the same.

    I look forward to seeing how you get on in your future posts on the forum.

    Kind regards
    ChrisK
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I am sorry you have had to find us. I am 59, I began PsA in 1997 but it was not accurately diagnosed until 2006 when my soles and palms obliged with a bout of pustular psoriasis. I began the DMARDs in 2002 and now take injected methotrexate and injected humira, an anti-tnf. I know this is controlling matters but the PsA can still flare from time to time and they do nothing to reduce pain levels. OA was diagnosed in 2011.

    I worked for seventeen years but was fortunate in that I was self-employed. The only benefit I claim is DLA and I was amazed to be awarded the higher-rate mobility from the start:. I think I applied back in 2007 before qualification became more stringent. I am waiting to be transferred onto PIP but nothing has happened yet. I manage around the house and can walk unaided for exercise (I intend returning to the gym too now Christmas is done) but when shopping I use a seated rollator so I can rest when necessary and more easily carry any purchases. I am now retired, fortunately I have a husband who had a good job so financially things are OK enough.

    I have tried many of the drugs over the years and nothing has 'worked' in a way that healthy people would regard as effective: there is no cure, any kind of arthritis is progressive and degenerative but the rate at which they happens is as individual as us. I know that the meds have slowed the progress of mine but of course they do nothing for the OA. I am very fortunate in that I do not have any visible joint damage but I am bone-on-bone through both knees and my ankles are going the same way too, 'tis the nature of the beasts. The medication combined with pain relief allow me to get on as best I can, life is not easy but it could be far worse. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • orthoman
    orthoman Member Posts: 14
    edited 30. Nov -1, 00:00
    moderator wrote:
    Hello

    Welcome to the forum. The member of this forum are friendly, helpful, empathetic, will offer light relief, support, offer you advice and suggestions and will answer any of your problems or queries if they have experienced them.

    There are several people on here who have psoriatic arthritis and will help answer any problems. In regard to your problems with the dwp have you contacted the CAB to help and advise you. They have people who are trained in these matters. Have you got letters from your various consultants and your GP giving details of your long standing health conditions. Versus Arthritis have a freephone helpline, 0800 520 0520 who you could ring and chat over the problems you are having. The lines are open Monday to Friday.

    I am one of the moderation team and we all have one or more of the Arthritis 'hanger ons' or care for family with the same.

    I look forward to seeing how you get on in your future posts on the forum.

    Kind regards
    ChrisK

    Thanks for your response Chris
    I have a tribunal on the 16th and have asked cab to be with me. I have got all my rheumatologist reports back to 1994 and physio and occ Heath and podiatry. As I have said I have worked all my life despite the pain and deformity and the dwp are using this against me.as you can see from my medication I’ve been through it all and had my fair share of knocks with side effects etc. I,m really angry at my position and I feel the dwp are cruel to the extreme in what they are doing. Fingers crossed things go well as I don’t know what I’ll do if things do not get resolved.
    Thanks
  • orthoman
    orthoman Member Posts: 14
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Hello, it's nice to meet you and I am sorry you have had to find us. I am 59, I began PsA in 1997 but it was not accurately diagnosed until 2006 when my soles and palms obliged with a bout of pustular psoriasis. I began the DMARDs in 2002 and now take injected methotrexate and injected humira, an anti-tnf. I know this is controlling matters but the PsA can still flare from time to time and they do nothing to reduce pain levels. OA was diagnosed in 2011.

    I worked for seventeen years but was fortunate in that I was self-employed. The only benefit I claim is DLA and I was amazed to be awarded the higher-rate mobility from the start:. I think I applied back in 2007 before qualification became more stringent. I am waiting to be transferred onto PIP but nothing has happened yet. I manage around the house and can walk unaided for exercise (I intend returning to the gym too now Christmas is done) but when shopping I use a seated rollator so I can rest when necessary and more easily carry any purchases. I am now retired, fortunately I have a husband who had a good job so financially things are OK enough.

    I have tried many of the drugs over the years and nothing has 'worked' in a way that healthy people would regard as effective: there is no cure, any kind of arthritis is progressive and degenerative but the rate at which they happens is as individual as us. I know that the meds have slowed the progress of mine but of course they do nothing for the OA. I am very fortunate in that I do not have any visible joint damage but I am bone-on-bone through both knees and my ankles are going the same way too, 'tis the nature of the beasts. The medication combined with pain relief allow me to get on as best I can, life is not easy but it could be far worse. DD

    Hi dd thanks for your reply,
    As mentioned I have had psa for nearly 40 years and applied for dla in 1984 when I got
    Particularly bad I was awarded high rate mobility and low rate personal care for life. I pushed through the pain barriers and continued to work as a service manager in the nhs but it is being used against me by dwp and they are saying that I should not have got the benefit in the first place. I have totally mangled hands and feet by the way and have psa in most joints in my body. I have a tribunal on the 16th January so fingers crossed they reverse their decision. I have cab going along with me also. Hopefully medical evidence will endure.
    Orthoman
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Hey, are you my twin :lol: We have a lot in common though mine's RA. Diagnosed at 15, joints all over the place, some of them fused, some replaced; had gold injections long, long ago. I even had cancer too but i can't blame the meds as I hadn't got to DMARDS way back then. But I do applaud you for continuing to work. I couldn't after my first son was born.

    I wish you the best of luck re your appeal. Do let's know how it goes.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • orthoman
    orthoman Member Posts: 14
    edited 30. Nov -1, 00:00
    Hey, are you my twin :lol: We have a lot in common though mine's RA. Diagnosed at 15, joints all over the place, some of them fused, some replaced; had gold injections long, long ago. I even had cancer too but i can't blame the meds as I hadn't got to DMARDS way back then. But I do applaud you for continuing to work. I couldn't after my first son was born.

    I wish you the best of luck re your appeal. Do let's know how it goes.

    Hi sticky,
    I have read a lot of your posts and comments and yes you could be my twin hopefully things will go well for me, was speaking to cab today and preparing my submission and she says she was surprised I got awarded the high rate for mobility on dla as I said I had to shuffle when I walked due to heel pain and not being able to lift my feet if the ground. According to the cab woman she reckons that you should be virtually unable to walk to get the high rate so thinks the dwp made a mistake. However I know many people who got and still get high rate dla who don’t meet that criteria, most people with psa, oa or rheum arthritis will certainly be in pain when walking like me so I don’t understand what’s different about me. Also most of us have fluctuating pain in all areas which is standard across the board. Thanks again for your interest and I’ll let you all know how things pan out.
    Orthoman
  • Claire89
    Claire89 Member Posts: 13
    edited 30. Nov -1, 00:00
    I'm 29 was diagnosed with rheumatoid when I was a teenager then changed to psoriatic and now saying I osteo in my lower back.
    I also have bent feet and toes aswell as my right hand my hand is my dominant hand and is bearly usable now. I have crutches can only use the left 1 tho I feel that makes my lower back and hips worse. I've tried and failed with so many medications I have now been told I have yo learn to deal with the pain so I'm off to the pain clinic now.
    I also work in the nhs I only do bank tho as I couldn't cope with 3/4 full days, although I am currently on the sick as I can't move my back I can't bend sit or stand and struggling to walk my legs don't seem to work when I'm like this. As am bank it's classed as a 0 hour contract I hot working tax credits for my kids and nursery as I only do part time. I am now waiting a tribunial as they stopped them all as I wasn't doing enough hours some weeks instead of doing my 2 shifts I would only do 1 or 1 and a twilight shift which wasn't enough now I'm stressed and ill waiting to find out how much I have to pay back or even get criminally charged or something am so worried I wasn't even thinking to tell them ever other weeks I dropped a few hours. As I didn't want to keep going on the sick as previously I was of for 10 weeks I kept my tax credits and they only gave me 16 pound per week sick money so I didn't think it would matter.

    But as I've found out it does and I am so stressed waiting on the outcome and having no Money aswell as in the middle of a real bad flare and my ibs playing havoc
  • JoeB
    JoeB Bots Posts: 83
    edited 30. Nov -1, 00:00
    Have you actually been formally charged with Fraud by the Crown Prosecution Service or is the DWP just making allegations and requesting repayment on the basis of their video 'evidence' ? Video evidence from a single occasion and in the absence of any supporting or other additional evidence would be of limited value.

    Were you at any point interviewed under caution ?

    One final point - the onus is on the prosecution to demonstrate beyond all reasonable doubt that you committed the alleged offence. Obviously your Solicitor (and Counsel if briefed) will discuss this point further and suggest their opinions regarding the best defence strategy to employ. I am making the assumption that your Solicitor is one who regularly deals with this type of defence work - not someone from the local High Street more used to conveyancing and wills etc

    I would be inclined to confirm with the Solicitor that they have requested and examined the 'chain of custody' records and other factors ('Checksums', 'Hashes' etc) involved in the integrity of digital evidence. Ultimately all digital evidence is weighted as 'hearsay' within the English legal system and challenging it often aids a successful defence.

    Arthur
  • orthoman
    orthoman Member Posts: 14
    edited 30. Nov -1, 00:00
    Hello Arthur.
    Thanks for your response.
    The dwp has responded to a phone call that I think came from a disgruntled member of my staff. I manage 26 people. This person was under suspension at work at the time of the call and since then resigned. The dwp videos me a total of 20 minutes on 3 separate occasions and as I have a good sickness record at work surmised that I was taking the mick. I have never been physically assessed by them and my doctor and specialists etc backed up my initial claim. During the time I was videod I was 3 stone lighter than normal as I had tried the diabetes reversal diet and was living on 800 calories a day I also had successful insoles made for the first time and was enjoying relief from pain that I have suffered all my life. I actually had a massive flare up about 4 months later so ironic. Anyway I was interviewed under caution and then had my money stopped etc. Then the bombshell of them saying they were prosecuting and I appeared in court to hear the charge of benefit fraud against me. I just got a solicitor at that point and I’m not sure how good he will be to be honest. It seems odd that this preceded my tribunal to reverse the decision they made which is on the 16th January. I have someone from cab that has done my submission taking account of all my medical records etc which date back years. Another funny thing is that it seems there is a page missing in their documentation as the adjudication officer asked for more evidence and it was referred to but the page that they referred to is missing. This will be raised also.
  • JoeB
    JoeB Bots Posts: 83
    edited 30. Nov -1, 00:00
    It appears (to me) from what you are saying that you have appeared before the Magistrates' Court who have referred the case for trial ?

    Concurrently the DWP are undertaking some type of review of your claim ?

    There are 140,000 Solicitors in England and Wales so do verify that the one you have instructed has a proven track record with this type of work. Their websites usually provide a biography with any cases of note.

    You might also want to ask your Solicitor regarding the legal position of the DWP reviewing your claim (assuming my impression is correct) whilst proceedings are ongoing.

    If it were me I would be accompanied by a Solicitor to any subsequent meeting, for whatever reason, with the DWP.

    You may be interested in this case ( https://tinyurl.com/y7a5gvtv ) albeit from Northern Ireland, that has some similarities and was dismissed.

    Arthur
  • frogmorton
    frogmorton Member Posts: 26,738
    edited 30. Nov -1, 00:00
    orthoman I was horrified to read your story!! I would jolly well want to show them my feet if I were you! This is dreadful I cannot think what to say to you to help and am finding it disgusting that genuine people are treated like criminals.

    I do hope all will go well for you and please do keep in touch ((()))

    Toni x
    Love

    Toni xxx
  • JoeB
    JoeB Bots Posts: 83
    edited 30. Nov -1, 00:00
    A judgement here about video evidence that may also be of interest :- https://tinyurl.com/ychryl6d

    Unfortunately it is in Microsoft Word format and so requires either a copy of MS Word or Word viewer software.

    Nevertheless perhaps of some interest to you and your Solicitor.

    Arthur
  • orthoman
    orthoman Member Posts: 14
    edited 30. Nov -1, 00:00
    Thanks all for your help advice and interest in this.
    I’m based in Scotland so under Scottish law you get called to court and read the charges that they are considering bringing against you. I have had this, then you wait until they indict you I am still waiting for this to happen where I need to plead guilty or not guilty. When I appeared in court the first time I was told it was private and was shocked when it appeared in the local paper. I work in the nhs and hadn’t mentioned it to my bosses as my life was quickly falling apart and I was suspended from work for this omission. I have since needed counselling and anti depressants just to be able to get by and to be honest I’m close to suicidal. I only hope the tribunal goes in my favour as they will not have a case against me if I get a decision in my favour. It seems to me they jumped the gun in taking this to prosecution before I had my tribunal as it’s caused so many issues for me re my work and health. I am under so much stress that my conditions have deteriorated and I am struggling with daily life even though I’m not at work. Also I love my job and the way I was treated makes me cringe as I’ve given the nhs 37 years all of it with psoriatic arthritis and have never had to have a sickness target or discussion. I’ll look at the stuff you sent me Arthur and try to make the best out of my current situation. If anyone knows any figures on how many people with arthritis got high rate mobility it might be helpful because the nature of arthritis is fluctuating we all have times when we feel better whilst walking and can manage and plenty of times when we can barely put our feet on the ground. I also feel that as an organisation supporting people with arthritis I would maybe get some support from versus arthritis either moral or someone their who understands and can help me in any way.
  • orthoman
    orthoman Member Posts: 14
    edited 30. Nov -1, 00:00
    Hi Toni
    Yes I asked my cab advisor if I could show them my feet and she said no I wouldn’t be able to. However I am printing pictres which I intend to take on the day also my hands are clearly disfigured so rather than do what I usually do and keep them under the table I will show them proudly. It’s an eye opener getting your medical notes because like I say i have had this condition for nearly 40 years and been on virtually every medication and am very disfigured but when you read my notes in my view they do not describe my condition very well. For example if u have a routine rheumatologist appointment and go in and say I’m still hurting and in pain but there’s no inflammation the letters read as if everything is fine and there’s no mention of me complaining of pain. Luckily there’s loads of instances of me complaining of painful feet and hands and resultant steroid injections and obvious changes in treatment but I suppose the rheumatologist get that used to seeing people that it’s second nature to be almost apotgetuc in their letter writing and recording of notes. Anyway thanks again for all your responses good people.