PIP, DLA and AA
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Another PIP tribunal?

RenatefordRenateford Member Posts: 7 Connected
edited July 2018 in PIP, DLA and AA
I have just got back from the tribunals. Am still confused, muddled. I knew 6 weeks ago about the appointment and have been panicking and feeling bad since. I suffer physical, mental, eating and personality disorders amongst other ailments. I am liver transplanted (liver cancer) and have to take a lot of medication, suffering many bad side effects.  The hearing was a disaster. They suddenly realised that there were medical papers missing and the papers from Germany (I used to live in Germany) could not be understood. The PIP claim is to change from DLA which was granted 8 years ago. The medical papers had at that time all been translated and in the hands of DWP.  As years have gone by, I have deteriorated. Mentally and physically. When I was told the case is to be adjourned, I was shocked and had a massive panic attack. They were kind but there was no help other than a cup of water. They asked if I wanted to take some air outside. I could not stand up (because of my back and hip problems) I was completely numb in the legs.  I could not see properly hear anything that was being said and everything was spinning around. I thought it was going to turn in to a heart attack. I have been used to these panic attacks. I have always received help. There were medical people present. Why, when they saw that I wasn't getting any better, did they not try and help me ? I managed to pull myself together slightly (otherwise I would have passed out completely) I felt like a criminal. It has now passed. I am home in my own 4 walls, where I feel safe. Apparently when they have all the details required, another hearing will take place. I would honestly rather die than go through that again. I suffer many panic attacks .- most of which are at home and during the night. I manage to keep it under control. But for this to happen in public and being given no help - it nearly killed me. I was just asked, before I left, to sign an agreement which meant they could obtain medicals evidence from doctors. I obviously agreed willingly. I could however not read what I was signing as my sight was just blurred until I got out of the building. I am now devastated, fell a hopeless wreck ! I would appreciate any advise for when it comes to another hearing or would like to know what others have experienced.
Thank you for reading and all the more thank you for any comments. 

Replies

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Hi,

    I'm sorry to hear that you've been through all that today! Did you take someone with you? You're allowed to take someone with you to support you through the hearing.

    Unfortunately sometimes a hearing is adjourned because of evidence reasons and today yours was an issue because they couldn't understand what was written and further evidence is needed. Hopefully you won't have to wait too long and i totally understand the anxiety it causes but appearing in person will give you the best chance of a decision in your favour, rather than contact them an opt for a paper based hearing. It's your chance to tell them how your conditions affect you and will allow them to see how you're affected. Maybe a friend or family member can go with you for the next hearing?

    Good luck and i hope a decision goes in your favour.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • RenatefordRenateford Member Posts: 7 Connected
    Hi ! Thank you very much for your reply. I am afraid, the more people present the worse I get. Especially if it involves friends or relations. I just cannot talk. I stutter and stumble and go in to panic - all the time. This happens lately if I even arrange a pleasant occasion. I can't cope at all, when it comes to talking. My family, I haven't even told about the situation. I am too embarrassed to say it has got this far with me. I used to be such a hard worker and could always help others. About my mental disorders, I am also to ashamed to talk about to family. I just had a rep. from Community and Law with me today. Very kind and understanding. But having 5 people in the room altogether was too much. The panic was already deep down but I kept it under control until the unexpected statement about what was missing. I know that the English translations were there before and also a clear picture of my health and problems from my english doctors were sent in. When I got home and could think clear again, I just asked myself "why did no-one there try and help me when I was gasping for breath and couldn't hear and see". There was a doctor there and a medical expert (disability wise) Are they not allowed to help ? What if it had REALLY been a heart attack. I was holding my chest all the time as I was in pain. I know I would not survive another hearing. (Sounds dramatic) They also had the papers BEFORE I attended- could they not have already postponed it then, instead of me having 6 weeks of even less sleep than my normal hours - which are sadly 2-3 hrs a night the last 10 years. 
    You have however, helped by answering. It is nice to know that it has been read through. I can babble in writing - but can't open my mouth. So sad really. I am on the waiting list for therapy with "WELLBEING", clinically and  peer support.
    Thanks again for your reply. I too, wish you all the best. 
    HAVE A GOOD WEEKEND. 
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Welcome to the community, @Renateford

    I'm so sorry to hear about this- it must have been a really tough day. Well done on getting through it! You've had some great advice from Poppy, but please do keep us updated and let us know if we can be of any assistance. 
  • mikehughescqmikehughescq Member Posts: 5,914 Disability Gamechanger
    They theoretically have the papers in advance but not always in practice. Current copying and postal issues within HMCTS mean some tribunals may only receive them just beforehand so they may not have had time to preview properly. They therefore may not have realised what was missing until the hearing started. You now have a period of time before it’s relisted to get yourself representation. Had you had a representative they may not have allowed it to be listed at all and an adjournment would not then have come as a shock as a good rep would prepare you for all eventualities. Use the time well.

    For starters it’s now clear that all DLA to PIP conversion cases should have a PIP 1 form in the appeal papers showing whether you asked for your DLA evidence to be taken into account. You need to check your papers immediately for that and then let DWP and HMCTS know that you won’t accept it being relisted unless the PIP 1 is in there. You should also write to HMCTS and ask for a private hearing. Members of the public don’t normally attend but they can. It’s a public hearing so, if you don’t want that, ask for a private one. 

    As far as help is concerned it’s a tricky one. It can be very hard for someone who doesn’t know you to distinguish between upset and a panic attack but also tribunals hear 8 cases plus paper cases each day. It’s like sitting 2 3 hour exams all day every day. All delays are blamed on them. If the next case was delayed 20 minutes because they were helping you then the next person could have been in even greater distress and may well have been on here complaining how awful the delay was etc. So a judgement has to be made and often that’s left to clerks who are often equally ill-equipped. Bottom line is that if you are in shock from a decision you weren’t prepared for then someone is always going to be held to account and blamed. It doesn’t always mean they got it wrong though.

    Anyway, next step, get a representative who will appear on the day.
  • YadnadYadnad Posts: 2,856 Member
    edited July 2018
    They theoretically have the papers in advance but not always in practice. Current copying and postal issues within HMCTS mean some tribunals may only receive them just beforehand so they may not have had time to preview properly. They therefore may not have realised what was missing until the hearing started. You now have a period of time before it’s relisted to get yourself representation. Had you had a representative they may not have allowed it to be listed at all and an adjournment would not then have come as a shock as a good rep would prepare you for all eventualities. Use the time well.

    For starters it’s now clear that all DLA to PIP conversion cases should have a PIP 1 form in the appeal papers showing whether you asked for your DLA evidence to be taken into account. You need to check your papers immediately for that and then let DWP and HMCTS know that you won’t accept it being relisted unless the PIP 1 is in there. You should also write to HMCTS and ask for a private hearing. Members of the public don’t normally attend but they can. It’s a public hearing so, if you don’t want that, ask for a private one. 

    As far as help is concerned it’s a tricky one. It can be very hard for someone who doesn’t know you to distinguish between upset and a panic attack but also tribunals hear 8 cases plus paper cases each day. It’s like sitting 2 3 hour exams all day every day. All delays are blamed on them. If the next case was delayed 20 minutes because they were helping you then the next person could have been in even greater distress and may well have been on here complaining how awful the delay was etc. So a judgement has to be made and often that’s left to clerks who are often equally ill-equipped. Bottom line is that if you are in shock from a decision you weren’t prepared for then someone is always going to be held to account and blamed. It doesn’t always mean they got it wrong though.

    Anyway, next step, get a representative who will appear on the day.
    I know that you mean well, but on behalf of the poster how would they know where to get a rep from? CAB and other agencies don't do it as far as I know and there is no point in just having an advocate sit with them if they know nothing about welfare rights.

  • mikehughescqmikehughescq Member Posts: 5,914 Disability Gamechanger
    Independent advice centres still exist as do unemployed resource centres. Local authority welfare rights have seen cuts like everyone eise but are still hanging in there and some CA volunteers or paid staff do actually rep although they’re few and far between. Main thing is to ask. Additionally you have people like the Tribunal Representation Unit and lots of charities representing the interests of people with specific conditions who also have WROs or appeals reps. Add in student welfare organisations, law centres, mental health advocates and many others. There are some advice deserts but not many. More likely is that information about them is poor.
  • April2018momApril2018mom Posts: 2,869 Member
    Welcome to the community!! 

    Take a friend or family member with you for support. They can prompt you to answer the questions. Good luck and please let us know what happens. Previous posts have contained some useful advice. If we can be of further advice and assistance let us know.

    Hopefully you’ll get something. 
  • mikehughescqmikehughescq Member Posts: 5,914 Disability Gamechanger
    Welcome to the community!! 

    Take a friend or family member with you for support. They can prompt you to answer the questions. Good luck and please let us know what happens. Previous posts have contained some useful advice. If we can be of further advice and assistance let us know.

    Hopefully you’ll get something. 
    Sadly that is incorrect. A family member can come along as an observer, who says nothing, or a witness, who gives their own evidence. They cannot come to prompt someone who is already in the room to answer their own questions. That’s why so many family members get upset and feel they were told to shut up. 
  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
    My friend was asked at the end if they had any questions or wanted to add to say anything.

    thry were not allowed to talk for me though 
  • BenefitsTrainingCoBenefitsTrainingCo Member Posts: 2,692 Pioneering
    Renateford,
    I'm really sorry to hear about your experience, but I don't have much to add to Mike's advice. I do realise that you might have expected them to notice that there were things they couldn't understand, but as Mike explains, tribunals are under huge pressure at the moment and it's not longer the case that they will have had a chance to look at everything in detail beforehand.

    As to why they didn't help you, they may not be allowed to, they wouldn't know what your condition is. As with any public building there should be a first aider on the staff. and I'd expect it to be more appropriate for them to alert that person. The medical member of the panel could have a variety of different backgrounds. Their responsibility is to get through the work of the tribunals; your safety is likely to be the repsonsibility of the clerks/building management. If you are not happy about the way in which they responded, you could complain to the HMCTS office. However, I think, as Mike suggests, it's probably more helpful to concentrate on preparing for the rearranged hearing. 

    You say that you've had a rep from Community and Law, so perhaps you have already had advice about preparing a submission, or you've already sent one in before the adjourned hearing? This would be a short statement about the points you think you should have been awarded, and why, linking it to the evidence you have. It's not essential to have one, but it does help as it can speed things up for the tribunal. 

    Other than that, as regards your access to justice given the panic attacks, is there anything that would help? Would it help for the tribunal to come to your home? (called a domiciliary hearing - rarely granted now, but worth mentioning if it would help you). Or is there a venue nearer your home which they could use where you might feel more comfortable? If you are going to request an adjustment like this, the sooner the better. My main piece of advice would be to make sure that somewhere in the paperwork you have made clear what effect nerves and panic have on you, so that the tribunal will understand if you are not able to respond to questions, and will be able to draw correct conclusions from that.

    Good luck, and do let us know how it goes.

    Will


    The Benefits Training Co:
    Paul Bradley
    Michael Chambers
    Will Hadwen
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  • RenatefordRenateford Member Posts: 7 Connected
    Will 
    Thank you so much for your information. I have suffered these panic attacks since 1983. This was my 3rd tribunal appearance. The other ones were for DLA which ended in a similar way only not quite so bad as Friday. The judge was even the same person. It was made very clear to them, that I have problems as soon as it involves talking and gets worse with each person more in the room. I am on the waiting list for CBT. Clinical and peer support. I have had 2 phone calls regarding the clinical side and am receiving the first phone call for peer support tomorrow. Since Friday even my physical pain has increased and it is bad enough as it is. I am 24/7 in pain, but have learned to cope the best I can. Nighttimes I can not walk at all - so crawl to the toilet (which I need 4/5 times each night) Sleep is really about 2 hours a night for the last 10 years. I feel at "nerves end" now. I feel that before I ever have to enter that tribunal court again, I prefer to die (dramatic again) But I am still suffering dizziness and stomach pains since Friday. I feel a hopeless case and must add that the mental disorder side of everything can be much, much worse than most physical pains. 
    I would like to thank everyone for their comments and advice so far.
    Best wishes.  
  • April2018momApril2018mom Posts: 2,869 Member
    No problems. We are here to help you. 
  • RenatefordRenateford Member Posts: 7 Connected
    Hi! Well I hope you don't mind me updating you. I had the adjourned hearing yesterday. Suffered a panic attack, high blood pressure and chest pains already days before. Only to sit for 5 Minutes to be told that it is adjourned again. The reason being, quote : " The appeal was adjourned today because the Tribunal needed to warn the Appellant that the points and current level award of PIP could be at risk if the appeal goes ahead" I felt gutted, broke down yet again. I feel this as a THREAT and not a warning and it is like playing Russian Roulette. The pains are increasing week by week. By chance I happend to have a Dr's appointment today. I explained everything. Now I have agreed to go back on antidepressants again. I had been off them for 5 years now. Almost unwillingly, but I shall give them a try again. It may help against the panic and anxiety, but not the pain I am in 24/7. Nighttimes absolutely chronic leading to exhaustion during the day. I shall also be going for a blood test and the doctor is arranging for X-Rays of the hips. I was diagnosed with Arthritis in both hips 10 years ago.That could be the cause but not to forget 5 slipped discs and a fracture of the spine throughout the years.  I myself, have lost all motivation to carry on. In fact my life has no quality all at more at the moment. What is the point of carrying on living ? I hope this wasn't too long and thank you to anyone who takes time to read it. xx
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    edited October 2018
    I'm sorry to hear this! As todays hearing was just to give a warning, which they must do if there's any chance of lowering or even taking away an existing award. What award do you currently have? And do you have a representative to support you?
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • mikehughescqmikehughescq Member Posts: 5,914 Disability Gamechanger
    Did you have a rep? Get their perspective on the warning. If not then you’ll need advice about how to weigh it. Some warnings are spot on and some are way off.
  • RenatefordRenateford Member Posts: 7 Connected
    Hi " Thanks on the quick reactions. I am on standard living PIP ( £ 220 per Month) at the moment, if that means anything. Before I received middle rate DLA plus high rate mobility. 
     Yes I have a rep. from Community Law Services. We have arranged for him to call me in about 2 weeks to decide how things go on. Tomorrow I shall be getting the antidepressants from the chemist. But at the moment I am not sure whether to go back on them. Do they take away anxiety and panic attacks ??? They might help mentally but not with the physical pain ? I don't want to get dependant on them. The withdrawal symptoms 5 years was a nightmare - although through dr's observation. It took about 6 weeks to get completely off them.  I know there are cases fare worse than mine. But at the moment I feel LOST and completely alone.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    As you have a rep then you really should be speaking to them and getting their advice because they will know all about your case etc.

    Anti depressants do help with anxiety and panic attacks yes but getting the right dose and medication may take quite a while. It's extremely difficult to advice with anything medical on an internet forum because we aren't medically qualified in anything like this and we don't know how you're affected. If you're still unsure what to do then you should speak to your GP who will give you advise on what's best for you.

    Good luck.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • RenatefordRenateford Member Posts: 7 Connected
    Thank you so much again. My rep shall be contacting me in 1-2 weeks to discuss how we proceed. I shall try the antidepressants again  ( they are the same ones I was weaned off 5 years ago) I am being started on just a 5 mg Dosis. Arrangements are also underway for an appointment to have hip X-rays. I am still on the waiting list for talks with " Wellbeing " clinical plus peer support. I admire people who are in worse situations & are coping. I used to be like that - but have just become too weak to be able to achieve anything. This I also put down to the pains I am in at night giving me about 1 to 2 hours deep sleep at night ( since about 2009) During the day I am quite exhausted. Thanks for the good luck 🍀 wishes. I don't know what lies ahead yet, but will have to learn not to panic so much beforehand & cross each bridge as it comes. Easier said than done. My worse panic attack ever landed me in hospital and after blood test results I was kept there for 1 week in cardiology ( suspected heart attack) This obviously crops up in my mind each time I am confronted with stress or anxiety. 
  • WaylayWaylay Member Posts: 922 Pioneering
    @Renateford I hear you completely on the insomnia, anxiety and panic attacks. I barely slept the month before my assessment, and the week before my tribunal I was getting maybe an hour a night, and I had 3 panic attacks. They're so awful, and afterwards I'm completely useless for a few hours. :/

    Please note that I'm not in any way an expert, and I have no medical qualifications, so please don't take what I say as gospel! I have been on 14 different psychiatric meds in the past 24 years, though, so I've got experience (my depression is refractory, alas). At the moment I'm on Venlafaxine XR, 375mg, and Lamotrigine, 100mg. I have no idea how much of this you know, so please excuse me if I'm telling you stuff you're aware of.

    Some antidepressants help with anxiety and panic attacks, some can help with sleep, and some can help with chronic pain, too. Who prescribes for you? Is it just your GP? It sounds like you really need more expert help - a psychiatrist, an a pain clinic, ideally. Have you ha either of those recently? Can you be referred?

    These aren't recommendations, just information off the top of my head. Obviously you may prefer not to take meds, but from my experience:

    Sleep: Sounds like you have some bad problems with sleep! Lack of sleep makes mental health problems worse, and makes pain seem worse. Is your GP willing to prescribe some sleeping pills, or a small number of diazepam (also good for anxiety/panic). There are several anti-Ds which help with sleep, too: Mirtazipine (sp?), trazodone, and quetiapine (which is an atypical antipsychotic, but is often prescribed for depression).

    For chronic pain: Anti-Ds useful for chronic pain include Duloxetine, Venlafaxine, Amitryptaline (sp?), and to a smaller extent, Lamotrigine (actually a mood stabilizer). There are also two epilepsy meds that appear to help a lot of people with chronic pain: gabapentin and pregabalin. Obviously there are all the usual analgesics, like paracetamol, NSAIDs (ibuprofen, naproxen), and opiates/opioids. I assume you've tried them or don't want to.

    Anxiety/Panic attacks: Anti-Ds: SSRIs (prozac, etc.), as well as SNRIs (venlafaxine (although it seems to make my anxiety worse), duloxetine). Benzodiazepines (sp?), obviously. Some other antidepressants which I can't remember. BuSpar, which is a mild sedative. Gabapentin and Pregabalin can also be good for anxiety. I'm sure there are others.

    Obviously there are a lot of meds listed here, and some interact poorly with others. Side-effects and how well they work vary with dosage and for different people. Again, these aren't recommendations, just info. Maybe your GP knows about these, maybe not. If not, and you're interested in learning more, try to get referred to a psychiatrist and/or pain clinic.

    Hope that's vaguely helpful.

    Good luck!

  • RenatefordRenateford Member Posts: 7 Connected
    Hi waylay ! My goodness, you certainly have gone through it too. So sorry, but my heart goes out to you. Thanks also for your time, sharing all the info you have. After a liver transplant 2009, I was put on citalopram. 2013 I was determined to come off & the withdrawal took 6 weeks. A few weeks ago, because of the return of depression etc. my GP prescribed me with Mirtazipam. I stopped them after 2 weeks. ( constipation, nightmares, very low blood pressure and WORST of all WEIGHT GAIN) I reduced daily cal. intakes to 400 - 600 & still put on pounds. This is a real disaster, as I have suffered from eating disorders since I was 17. Anorexia, Bulimia. etc. It is still a big issue. After my hearing, I had a further apptmt. with my GP. Told him about what happened & had a further breakdown in the surgery. He " advised " me to go back on citalopram / ecitolopram. I hesitated, but as I am clinging on to every straw at the moment - I agreed to start on a 5 mg dosis. I started on these yesterday. I seem to remember having no weight gain with those. A big weight gain would make things worse & I would feel completely low & depressed with even less confidence/self esteem. All one huge vicious circle. I lost my job through having multiple slipped discs., Anxiety/panic attacks have been part of my life since 1983. Depression set in after the death of both parents within 9 months, shortly followed by my partner ( 54 at the time) All with cancer and between these losses, I was diagnosed with liver Cancer/Chirrosis - which lead to the transplant. The pain I am in today is from all the slipped dics plus a fracture and hefty side effects from the medications I am on. Arthritis was also diagnosed and polyneuropathy ( legs ) 8 to 10'years ago. I would do anything to be able to be at least fit be enough for a small job. But I can never say how my days go until I get out of bed & see how I can walk. It then takes 2 to 3 hours before I can carry on with a daily routine ( after about 2 hours sleep, as the pains are most chronic at night ) Now I have to see how to cope with the anxiety, as I have no idea what lies ahead ; a further hearing ?? A decision being made without this torture ??? 
    Thank you for reading! xxx
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